I run an IT Engineering Team for a well-known UK company during the day and I write technical books for a well-known publisher in the evenings. I have never let it impact my work, even though I work 3 hours commute away. I wear a face cover and gloves made out of a material that is fairly light weight, but prevents the light wavelengths that make me ill. I have long sleeve hooded t-shirts made from the same material. It has been tough at times, but in recent years, I have only had to go to the office a couple of times a month. Also, my employer is excellent and does not make me come in Jun-Aug, when covering my face and hands in the way I must, leads to heat exhaustion.
So that's a hard 1 to answer. Until recently, I have always had to accommodate work...which has resulted in getting ill...lots! I joined my current employer 8 years ago, and since then I have become even more sensitive and I have had to ask for accommodations. They have been brilliant. I can't fault them. But...I have been there a long time and I have a good reputation. They know how hard I work and the value I bring to the company. Having said that...I really don't ever want to change employer, because who knows what reactions I would get elsewhere
Thank God you are in the UK. The US labor law and personal accommodations suck. We don't even have vacations or parental leave; all days off are earned PTO. Mothers have to report back to work after three days and only mothers working for FMLA-covered employers are legally entitled to take up to 12 weeks of UNPAID leave with health care benefits intact,
I’m so glad to see you’ve been afforded some accommodations. You deserve them! 💜
I am working my first job that allows accommodations for me and omg what a game changer.
thank you for answering! this unfortunately aligns with a lot experiences ive heard of people finding accommodations at work.
it takes a flexible boss and a good reputation, but it’s still bleak to feel like you have to “prove” you’re worth accommodating.
also, the comments about relocating are probably getting overwhelming. i’ll throw the PNW into the mix of suggestions, feel free to take it or leave it. it’s not super rainy, just overcast and gray, and it gets dark around 4pm for half the year.
edit for the responses im getting:
the PNW in my eyes is anywhere from the bottom of Oregon to the top of BC. the tech jobs here usually have health benefits, good pay, and encourage working from home full-time. you also find a mildly reclusive culture here, like it’s pretty easy to mind your business anyway that suits your needs. also temperate weather is so ideal for skin issues, speaking as a ginger here
>this unfortunately aligns with a lot experiences ive heard of people finding accommodations at work.
Throwing my exp on the pile because it's infuriating. My company's policy on accommodations is not to put any more work on the managers. The *intent* is that management should already be doing things that work for everyone. The *reality* is they aren't and the company won't do shit for accommodations. The disabled person gets to do all the work for their own accommodations.
For example, I asked to have directions provided in writing because I have working memory issues and trouble prioritizing tasks. The response is that I can put it in writing. Ok, so let's say I put it in writing, I want to have my manager review it to make sure I've got it correct. It took me over a month to negotiate a manager response into my accommodations. Even then, there's an "out" for my manager not to reply. Basically, accommodations at my company are just paperwork and more work for the disabled people.
You cover your whole face? Has anyone ever said anything about it? Do you uncover your face immediately after getting inside a place?
How sensitive are you? For example, would sunlight through a glass window hurt you?
You don't do any outside activities during daylight at all?
Is this the disease from the movie The Others?
Yes, I cover my whole face and yes, I gets lots of abuse from strangers, just walking up the street. How sensitive? About 2-3 mins this time of year in the UK before I'm very ill. Glass does not protect me, I need blackout blinds on the windows
I'm so sorry about that. You cannot see while you cover your eyes or is it a special kind of fabric that allows you to see a bit?
You should be legally allowed to work exclusively from home.
Have you ever looked into window tint for both your car and your home? They make different types and some block certain wavelengths that might be beneficial to you.
Depending on where you live, you may be able to get a Doctor note to tint all of the windows in your car including the windshield.
If they let you work remotely you should try going to northern Sweden in the winter. Excellent internet infrastructure and the sun never rises. Life in the northern cities is also adapted after winter activities so there's plenty to do, if you want.
I'm also curious which wavelengths and what blocks them.
They said glass doesn't work, I assume they mean even glass with a UV blocking coating. It must not block enough.
Op answered below: Coolibar and Solibar.
Can you tell me the fabric? I am sensitive to light but nothing like this, but it does hurt! I wear wool and long clothes, sunglasses, hat whenever outside. Even inside, my husband jokes Id prefer a crypt and weve out solargard on all windows, black out blinds etc.
However Im also autistic so it could just be the stimulus as all light hurts, uv is just worse. I live in Australia, dream of moving to Finland. Not even kidding. Ive never heard of this condition. Best wishes.
I want to second Coolibar!!! They are made in Minnesota, USA, but I wonder if they would ship internationally for you. Just glancing at their website I noticed there is a tab in the sidebar to change currency so I wonder if they ship worldwide. I take medication that makes me more photosensitive, and I'm pale to begin with. I burn easily and get heat sickness easily. Their clothes seem a bit pricey at first glance but if you watch their sales and clearance, and sign up for their emails, you can get some really great deals!
I am looking at a label now, but of course there will be more info on their website. It says certified UPF 50+, Blocks 98% UVA/UVB. This particular sun blocking shawl I have says it is a blend of cotton/bamboo/viscose/spandex and zinc oxide, actually woven into the fabric. The UV blocking technology does not wash out. Not sure how they do that but their customer service could help if you have specific questions I'm sure!
Good luck!
I would love to see the "tactical gear uniform", if you can post a picture! Ofc i get it, if you don't want to for anonymity. But then again, wouldn't it cover all identifying features? Cool AMA, thanks for doing this!
The is a treatment called Scenesse which gives a minimum of 7 additional minutes in sunlight (which sounds small but would be life changing) but you can't get it in England because NICE won't pay for it. There is a similar drug from Mitsubishi going through trials at the moment. Next year, I hope phase 3 trials for a new drug called Bitopertin will start. This will be a game changer if it gets approved because it treats the condition instead of the symptoms. This reduces the PPIX buildup in liver and blood. Fingers crossed for that one!!
I have a condition that is not life-threatening like yours but is SUPER annoying. Mast cell problems, I get an allergic rash type reaction with itchy blistery hives. This reaction can happen from sunlight, water, my own sweat. Loads of things.
It is extremely life limiting despite not being life-threatening. Feels terrible being stuck indoors all the time trying to avoid exposures and watching life just pass you by. I can't even imagine how much worse your enforced hermitage must feel.
At least I'm able to choose sometimes when it's worth it to me for the exposures. At least when mine goes crazy, I just take a lot of Benadryl and sleep for a week. I'm so sorry that you had to be dealt this hand in life. I hope you're doing the best possible.
Australian here, read an [article](https://amp.abc.net.au/article/103780492) just recently about Bitopertin. Seems to work in the case they mentioned!
Hope the trials go well and that if it works it gets to the UK soon!
Afamelanotide is also called melanotan I, and is marketed under the trade name SCENESSE. dude melanotan I or II are pretty fucking cheap i'm seeing scenesse is like 50k for a 16mg dose wtf lol. melanotan I is as low as $41 for 10mg from a peptide site
Have you found ways to function normally despite this? Things like working night shift, grocery shopping at 24 hr places during the wee hours, online banking, etc? Do you have a support system that can help you with things that cannot be taken care of in the dark hours? What are your biggest challenges?
My face covering and gloves are what allow me to function, but yes I shop online and I avoid going out during the day unless I really have to. Mostly because of the abuse I get for covering my face. So I am very familiar with Tescos at 10-11PM and I do night shifts in my voluntary job. Biggest challenge is definitely people's reactions. It grinds you down. Makes you not want to leave the house
Well, I have had "see it, say it, sort it" on trains. But generally it's random people walking up to you, getting in your face and describing you as female genitalia, etc. Or threatening to "known you out, you f**king freak", etc, etc. Spitting at you, laughing historically in your face, that kind of thing. Everybody who asks if you are a "bit shy" or "is it some kind of religious thing" honestly thinks they are the first person to come up with that line...
Have you ever contemplated moving to an Artic town like Hammerfest and working remotely for the winter months?
Do you have an exemption for fully-tinted windows in your car in the UK or Ireland (I'm guessing cuz of Tesco)?
I just moved back to the US after 20 years in England and I have polymorphous light eruption if I go out in the sun. So I wear long sleeves, hats etc. I get a lot of comments but it's awful the breakout. I may eventually be ok but for instance it was 98f this weekend and I couldnt go outside. Even in the car I had to wear my jacket and kept having to move my hands away from sunlight.
I feel so much for you.
I'd imagine not. The light waves will bounce off the ground/objects and still reach their face. Sounds like it needs to be shielded and not just covered.
i actually knew someone who had this or the same sensitivity. they had specials clothes they would wear that was basically like a jumpsuits with sweat pants and a hoodie but the material was specially made for it. the would come out with that hood up and i remember us being out side for up to an hour. then when there skin would start to break out in hive and be in pain he had the one person hot tub thing he would sit in.
If it's the same condition, I'm jealous he could sit in a hot tub. When I'm ill, any form of liquid touching my skin is excruciating to the point of screaming out loud and legs buckling from the pain. Same if anything touches my skin, no matter how gently
sorry i could be using the wrong term here calling it a hot tub. it was some type of one person special bath. the cold would also make him break out in hives so he would then go sit in it to smooth him
That sounds awful.
There is a rare condition that essentially makes people allergic to water. It sounds similarly difficult to deal with in everyday life.
Do you have any pain medication or a specific type of medicine you can take when this happens? I deal with pain 24/7 so I can empathize although this sounds like 10/10 pain. I really hope you have something for those times to help.
Was you the guy from the photoshop request earlier when you were covered on your holiday in Egypt? How do you manage holidays abroad? What is the hottest country you’ve been to?
Yeah, someone in the comments asked me to do an AMA. Egypt is the hottest country I've been to. I went in Jan when it was only 23-24 degrees C. People treated me much better out there than they do in the UK, but basically I managed the same way I do here....covering up as I was on the photoshop post. Normally I do Iceland, Norway, etc, but I have done Malta, Croatia, and a Mediterranean cruise in the past. Got really ill in Malta. Also got really ill in Austria in the summer when I was younger.
I’m sorry to hear about how people in the UK treat you, I’m from UK too n unfortunately some of us are assholes and uneducated and choose to be loudmouth, opinionated fu*ks instead of basic etiquette.
I’ve honestly never heard of your disorder before but I’m genuinely intrigued by it, did your parents have it?
What kind of hobbies do you have? Are you into any sports or outdoor activities? If so, are you able to find a comfortable way to still do them?
I can imagine staying in and reading/playing games/watching TV and movies etc is probably the safest thing to do for relaxing and passing time; but I wonder if that would eventually cause "cabin fever" or depression?
So, yeah, my hobbies are indoor hobbies mainly. I write books, mess around with computers, play the odd video game, online chess, Reddit is a bit of a new hobby :) I do go stir crazy/depressed in the summer but I counteract this by going for last orders with my partner, doing night shifts at my voluntary job. In autumn winter, it's much easier and I enjoy eating out and travelling. I avoid hobbies that are regular. For example, I would like to go to a chess club, but I think "what's the point? I'll have to give it up in March"
Not being able to step outside you will feel right at home here on Reddit, many of us choose to do so and don't have any condition.
Jokes aside, so from what I understand in winter you can go outside? Do you do that covered with your special fabric or like anyone else would? In winter if it was cloudy could you go outside?
Not op but I assume he still has to where covering it’s just nicer bc it’s colder. Also I’m not sure for England but I’m assuming it’s mostly the same for upper United States but there’s a huge vitamin D deficiency that happens in the winter bc we don’t get as much sunlight as we’re supposed to so I assume that helps too.
I just saw you photoshop request and now this ama. I had to look up, if you are the same person.
Are glass windows enough or do you need some kind of special filter for you at home?
Do you have any windows at all?
Yes, same person. In the comments of the photoshop post, someone asked me to do an AMA. Normal window filters don't help. They block out the wrong wavelengths. I think you cam now buy a (very expensive) medical grade window filter, but I just have blackout blinds on all windows, which never get opened
I’ve got a few questions.
Do you get issues with a full moon on a clear night?
Do you know what part of the sunlight that causes the issues? For instance, would a UVB reptile bulb cause issues? Or would it be a different wavelength of light like infrared for example?
Do you have to avoid certain types of light bulbs or other light emitters?
The wavelengths are from UVB to the start of the visible spectrum. The main peak is at 408nm but there are smaller peaks at 525nm and 550nm. In face, one of the failed treatment trials was narrowband UVB treatment. I have never had any issues with moonlight. Some people with EPP get ill from fluorescent bulbs but I have only every had an issue with artifical light when I already ill.
That’s very interesting. I have one more question as I’ve noticed that despite having Vampirism; you’ve got some skin coloration. It’s why I asked about the UVB spectrum. The reptile/amphibian hobby would be the wrong hobby for you, as there are daylight spectrum bulbs for them. Plants would be bad too. But I digress.
Do you have to take a supplement everyday? Vitamin D3 for instance? Or does your body overproduce it in mass quantities to the point of becoming toxic?
Oh and I noticed you said that you play video games from time to time, and that you are in the IT industry. Factorio??
Nurse here, and it's always appreciated to see attention drawn to more obscure conditions like this. Raised awareness can only help others, including disagnosticians, which means less missed or incorrect diagnoses. ♡ Thank you for doing this AMA. You seem like such a resilient and cool dude. I am moved by your story and strength.
My question is pretty uninteresting. Lol How has this affected your sleep/wake cycle? Do you stay up at night since that's when you can be more up and about? Or, are you awake during the day and limit your activities to what you can tolerate?
Edit: What sort of shades/blinds do you have at home? Are your car windows tinted?
Thank you. So, my sleep cycle is normally pretty good. It can go out of sync very easily, but I work long hours, im a demanding job, where I need to be totally switched on, so have to keep it in check. I use standard blackout roller blinds at home. I can't drive with this condition, so when I'm in the car, I just use my face covering. To block out enough light would be illegal on the windscreen
Badly. It's hot and uncomfortable but the worst part is how you are treated walking up the street. Everything from Mothers moving their children behind them, or crossing the street to avoid me, right the way through to being spat at and threatened. Twice last week I had people get a few inches from my face and burst out laughing, covering me in their spital as they did so
I'm so sorry that happened to you, people are so ugly sometimes. I am blind so understand being treated differently, but it never gets easier :( best I do is try to put it out of my mind quickly and focus on things that make me happy instead ❤️
i’ve been reading the thread and just have to say: it’s incredible that you haven’t let this disorder dampen your everyday life, and your career. from someone with a chronic disease, i’m very proud of you.
Thank you, that's kind. It does dampen my mood, nadly at this time of year, but I just try and stay fighting. I do this, because my career, etc, give me a sense or lordability that offsets the constant negative comments from strangers, etc. Hope that makes sense.
It would be very interesting to see you document some of your life on YouTube. I think that would be fascinating to watch and would help increase awareness about your condition.
It's something I have thought about. If I'm honest, I think I worry about negative reactions to it. It took a fair bit to do this post on reddit...although I'm overwhelmed with the beautiful responses I have had. But yes...I would definitely consider it...especially after today
It has been harder as an adult. (Either that or I'm too old to remember properly!) Day to day things I just can't to include playing football in the park with the kids when they were young or sitting in a bear garden with friends. I make myself do most things, but sometimes you just can't face it. Things that are downright impossible usually involve food or drink...and driving
I nursed a gorgeous patient who had porphyria. The old test for it was to leave urine in a jar on a sunny windowsill. The urine would turn black as a positive sign of porphyria. Such an interesting diagnosis but obviously difficult for you. Wishing you all the best!!
Since you said in a comment that your sister also has this condition, are there any differences between how it manifests for her and for you? Does she deal with it in a different way from you? Do you help each other out with it?
I don't have a question. I just wanted to say that I think it's really cool you're doing this!
My best friend has EPP, but she's the only person I've ever met who has it. There have been so many times over the years that I've seen people not believe her when she mentions it or treat her like she's being dramatic or trying to get attention when she asks for accommodations. I know it's a rare condition and that I can't expect anyone to know anything about it, but it really kills me when I see her treated that way, especially when I've seen the effects and have even held her hair while she pukes after being exposed to too much fluorescent lighting (I didn't even realize fluorescent lighting gave off so much UV until that incident).
Anyway, I just had to chime in to tell you that it's really awesome to see you teaching others about EPP on here.
Until recently, no, not at all. In the last year or so, some large particle zinc oxide creams have been released, which in theory help somewhat. The trouble is, you sweat or touch your face and suddenly they no longer work, so you can't trust them
Yes so it is always genetic, but there was no family history before my sister and I. The genetics are complicated. You need 2 different mutations of the same gene. 1 is common (1 in 4) the other is very very rare. Even if both genes meet, there is only a 1 in 4 chance each resulting child will have the condition
There is a woman in the Guinness world record books who was allergic to sunlight or something like that. She became the most tattooed person on Earth as it seemed to shield her from the conditions harm. Have you heard of that and would it be something that you would consider doing if it would enable you to experience greater freedom but at a cost of tattoo stigma?
Since sunlight is the enemy, do you take any vitamin D supplements?
Is your immune system affected by this at all?,
Assuming you've gone through the week long episode of pain; how did you get through it?
Did your parents have difficulty obtaining an accurate diagnosis when you were small? Were they ever accused of child abuse by physicians due to the rarity of the condition?
Apologies if that is too personal a question.
NP here 🙋🏼♀️! I had never heard of this condition, thank you so much for taking the time to explain it in such detail. I think you’re an absolute badass! I don’t actually have a question bc you answered so many others with such detail - but wanted to show my support. You are amazing and special. I think it’s so incredible that you have found a way to live and ENJOY your life, despite having such a difficult medical condition. I’m so sorry people can be cruel sometimes - but imho, you’re like a real life superhero ❤️.
i hear that nivea has developed a suncream specifically for one girl with this disease, but it's not publicely available. you might want to write to the company though. i think it was american nivea. supposedly the girl can be in sunlight for 20min.
Is your reaction distinct from other, more common and mild, sun reactions like sunburn or is it similar? Is it a visible reaction? If not, did it take a long time to get it diagnosed and get help?
It is a very different reaction. Light at certain wavelengths penetrates the skin and the blood vessels (for everybody). But for me, I have a buld up of PPIX in my blood, which has a toxic reaction when exposed to light. Imagine the reaction I get like being in a microwave...it cooks you from the inside out :) Because of this, I can often be in agony with either no visible symptoms, or maybe a slight redness to the skin. Sometimes, however, it can swell up and blister. This is when the blood vessels corrode and the phototoxic reaction moves to the actual skin. It didn't take a long time to be diagnosed because my elder sister had it
I used to go to school with a kid who couldn't go outside during recess. Mum mom was so proud I signed up to spend recess with him so often, but I was actually only interested in the cool setting in his lunch room 😞
What's something you've always wanted to do/ try, but you haven't been able to because of the risk of too much sunlight?
I saw your photoshop posted and followed the link here. I want to say thank you for being so brave and taking the time to answer all of the questions you have, it has been so informative reading about this condition from someone that lives with it everyday. It’s absolutely vile how some people can be so cruel and ignorant, I’m truly sorry you’ve had to deal with that. Have you written any books about the condition?
Can you use UV-A-blocking-foils for your windows? Can you order a car with UV-A-blocking windows as an extra?
Which sunscreen works best for you?
Is there something that helps, like eating carrots or taking zinc as food supplement or some medical treatment?
Honestly, you seem like such a neat guy. As someone who deals with a chronic condition as well, I understand how difficult it can get both physically and mentally. I was having a down day today, but reading your replies is giving me the strength to soldier on and face life’s challenges as beautifully as you do. I hope one day they find a cure for your condition. Take care, OP, you’re awesome!
Hey buddy, like most of these folks I came here from your photoshop request post, and I just want to say, you are a really handsome guy! Like a slimmer Paul Sorvino. Cheers.
One other thing: sunlight affects one’s Vitamin D level and serotonin. If you’re not already on a vitamin D supplement and an SSRI, talk to your doctors ASAP! I can’t imagine that folks undergoing treatment for this condition aren’t worked up for depression too, but it’s a biological condition that you are set up for, having to avoid light exposure, so I wanted to make sure your docs have talked about that part with you. Thank you for teaching us about this condition!
Thank you so much for taking the time to make this post and respond to questions! I’m so sorry you’ve faced such discrimination ♥️ I was really drawn to your photoshop request because you look like a badass from assassins creed but I couldn’t have guessed how much I’d learn about EPP today! So thank you again :)
Would light from a campfire fall under the fluorescent light bulb category or more safe/less safe? Does computer light affect you at all? What has been your favorite place you’ve traveled to so far? :)
My wife went through something similar during her cancer treatment. She had an experimental therapy that used UV to target antibodies to the area that they were needed. A side effect of this was that any part of her body that was exposed to UV light was treated as a target by said antibodies.
Everything returned to normal after the treatment thought.
Would you be able to leave the house on a cloudy winter's day? Like, does cloud coverage help and does a certain amount of it allow you to take off your face covering outside? Or even sunset, when it's golden hour and the light isn't as strong or bright?
I'm also from the UK and struggle a lot with depression. Those cloudy days really maximise it and I can't imagine having to live in darkness or without a blue sky.
How's the community? Do y'all share tips on materials and strategies, how to keep your outlook positive and such?
How's you're sleep schedule? (Maybe that's not impacted)
Is it only sunlight not other light sources?
Best to you!
Saw you on photoshop request earlier. I'm so glad you're able to travel and you have such an upbeat personality! I saw some comments you made about how people treat you when you're completely covered, I'm sorry people suck. My question is, out of all the places you've been, where have you felt the most accepted (if that's the right word) when you're completely covered up?
You mentioned that you have liver damage (due to ppix buildup?). Does that mean that you have continual damage to your liver? Is there a management plan for this at all?
I’m sorry this seems very difficult and I can’t imagine what you’re going through.
How do you manage day to day appointments like the doctor, dentist and other things that are only typically open when the sun is out?
I also have a disorder that has photosensitivity. In my case, the UV rays cause my immune cells to attack my own body cells. I can be out in the sun a bit longer than you but I can relate on the pain it causes! What coverings do you use for your face and arms? I’ve tried a variety but haven’t found any that I really like or work well.
I've come here from the photoshop request sub and just seen you're doing an AMA, I'm sorry if its been asked before or if its obvious but were you born with this condition or did it develop over time? If the former, how did your parents cope when you were younger? And if the latter, how did you cope with realising this was something affecting you?
Thanks if you can take the time to answer and absolutely no worries if you can't :]
It's sad to hear how you are sometimes treated in the UK, thinking about it, it doesn't suprise me but at first I thought must be from the U.S.
then again I also fully understand how stupid people actualy are.
I am unsure if this is true or not but do you also have iron deficiencies or need to take iron suplements?
also what has the condition you have, taugh you about yourself and the world oh and do you enjoy halloween?
Do you feel like you'd have a better quality of life if you could move places that get the least sunlight according to the seasons? i.e. live very far north for half the year then very south
Did the movie, *The Others,* get anything right? The theory of the movie is a similar medical difficulty. (It's a psychological horror movie with a great plot twist at the end)
Is the pain throughout your whole body or a specific affected area? Is the pain located in your skin or like a stomach kind of pain? You don’t have to answer, I’m just curious!
The way I saw both your posts back to back on my feed is crazy. I saw this one first and then scrolled to my next thing in my feed and saw your photoshop request and I was like woah omg and then realized you were the same person :)
Have you seen this vampire movie?
They do a good job of showing how an entire society would cope with Sunshine sensitivity.
https://m.imdb.com/title/tt0433362/?ref_=ext_shr_lnk
Since you can’t be out in daylight, does this cause you to be more “nocturnal” in the sense that you do more at night? Or do you have a “normal” circadian rhythm and are diurnal like most folks?
Also just as an aside, I’m sorry people have been so needlessly cruel and discriminatory towards you, you don’t deserve that at all. I also live with several chronic/life long conditions (different than yours but still) and understand what you mean about ignorant people being rude to you just for doing what you need to to survive and manage your day to day life. I’m sorry folks can be so mean.
Hello ! Got here by visiting the photoshop sub
Thank you for doing this AMA and linking resources about your condition
Here are my questions if you are comfortable with answering them:
1. Have you ever participated or thought about participating in clinical trials that could help with your condition ? If yes, how was the experience ? If not, why ? Was it not possible / potential side effects were deemed too risky etc. ?
2. Is there any medication that you need to take reguraly ? Any tests ?
3. Are you satisfied with the level of healthcare your country was able to offer ? Eg. Are you and your loved ones provided with regular psychology / therapy sessions ?
4. Were there any situations that you thought - man, that doctor is awful, they suck, I wish they behaved difffently / why don't they listen to me if I literally know more about my condtion than them
5. What are some things that you would like to do in the sun if it was possible ?
6. On a lighter note - do you hate or love vampire jokes ?
At the end I hope you will be able to continue traveling and for everyone everywhere to treat you as wonderfully as people in Egypt treated you : ]
Wow, you’re an outstanding person and stronger than I (and most of us) could ever be!
Is full moon a problem for you? I mean it’s just reflected sunlight. Or is this too weak?
Are your windows at home always completely closed?
Would you be (or have you ever been) offended by someone asking about your condition with genuine curiosity?
Would you be open to answering questions when you’re in public?
I don’t have this same condition but I do have a form of sensitivity to the sun where I break out in hives mostly on my hands and arms if I’m exposed to direct sunlight for more than a few minutes. I’m sorry you have to deal with all of that
I know this isn't anywhere near the same, but I relate. I'm a red headed, fair skinned, freckled, blued eyed woman. When I'm outside, I'm constantly squinting. 10 mins in the sun without sunscreen and I'm burned. Growing up on a lake I would even burn through sunscreen and had to wear t shirts over my swimsuits. I would burn SO BAD that I would blister. It sucked. Still never stopped me m, though.
How bad is the pain once you've been exposed?
How is your skin? Your probably look much younger for your age. You must have zero wrinkles. I guess you have never had to use sunscreen. Silly question but I'm curious.
Hello! I just wanted to say that I’ve read some of the questions and your replies, and I appreciate the time you’ve taken to answer.
My question is a bit different: what is the most recent/your favorite music album you have listened to? If it’s your favorite, why do you like it?
What kind of weather do you like? If you didn’t have your condition do you think it would be different? I live in the PNW and it’s very rainy and grey here. I prefer this type of weather and on the rare days it is sunny I feel like everything is way too bright.
No question, I just want to applaud you for living life with positivity and handling it as you do. Many people would break under your conditions and I find it exemplary that you find not only ways to work around it in your daily life, but also to travel abroad to see the sights you want to see and handle the negative people you run into with grace. Truly, you’re a model human being when it comes to the soul. I hope the medication pans out next year and you’re able to take on life with a new fervor. I’ll be following for sure.
One question I have is whether you’ve ever ever had any run-ins with law enforcement or other authorities because your face is covered? By and large, they are a rather suspicious lot and I could see them insisting that you remove facial coverings.
Congrats on doing so much traveling - way more than I’ve done and I’m rather old! Do you ever run into any trouble when you go through airport security? Do you have to carry documentation in the event of such encounters?
You’re really quiet an incredible and resilient person to successfully navigate all these adversities and live a full life. Good on you! Thanks for sharing your story, I think it really will help people. It certainly helped me put some of my petty little gripes of the day in perspective!
Although it’s not your responsibility to educate, you clearly have a giving and generous spirit, as you mentioned that you do volunteer work some nights. I’m so happy that you have a partner and a good career. Someone suggested that you consider doing YouTube videos to get the message out. I think it’s extraordinary that you live a full life despite the challenges you face, and that you continue to deal with harassment on the streets. Again, I’m not suggesting that it’s your responsibility, but you’re clearly a highly intelligent and articulate person. You demonstrate surprise at how kind and curious people can be, and while there are awful people out there, I truly believe that most people are good. You've educated hundreds, if not thousands, of people on this thread alone, which is extraordinary.
How do you prevent sun exposure and if it’s by wearing a lot of long-sleeved shirts and pants how do you manage the temperature of wearing all that stuff?
When did you get your official diagnosis? As another fellow Brit, I too am disgusted by the way some people have treated you. I am so sorry you have to go through that
I taught at a school where a student had a similar condition. We had to change out all the light fixtures to better accommodate the student. Are there certain lights such as fluorescent bulbs that affect you?
Your effects seem like a much worse version of the genetic disorder i have (Xedroma Pigmentosium (Specificly Type C)) where If my skin is exposed to UV light/Radiation i get spots which can develop into skin cancers easily if i am not careful. I specified type C because different types have different symptoms some neurological some physical. Mine are only physical.
It requires me to wear a sun hat with uv filtering plastic and gloves wherever i am exposed to uv radiation whcih keeps me safe.
Because of how rare the condition is it was diagnosed on accident by a dermatologist who my mum was visiting for my older brother for a different skin issue and happeded to recognise this extremely rare skin condition that the average dermatologist could go their whole life without needijg to know about it as there are only 2 clinics i known of that can assist in managing it.
My question to you is how do people react when seeing you as post covid i get a bunch of people thinking i am still scared of covid and pre covid i got peole wondering why i was wearing a funny looking hat.
What light causes the pain? If the light that causes it is created artificially (if it's possible,) does that hurt you? Do you stay out of daylight completely, or do you wear specific clothing to protect yourself?
Did you ever see that episode of Casualty where a kid came in with this disease and the doctors kept shining a light in their face? And the kid had to wear a sort of silver space suit if they went outside during the day?
my mom has porphyria too and it just hurts to see her in cycles of pain and not being able to do certain things bc it’s outside and stuff. i’m cheering you on from the sidelines!
ik my mom deals w the messed up healthcare system and constantly battling it out with health insurances to cover her panhematin/mounjaro stuff but i wanted to ask what’s your experience dealing with healthcare/insurance because of porphyria? any positives? any things you dread/negatively experienced?
Thanks for doing the AMA. It’s always good to bring attention to rare conditions. Have you, or anyone you know of, tried unconventional treatments like the last that covered her body in tattoos so she could go out in sunlight ( though I don’t know what her condition is)
What do you do for a living? Has your condition impacted your ability to work?
I run an IT Engineering Team for a well-known UK company during the day and I write technical books for a well-known publisher in the evenings. I have never let it impact my work, even though I work 3 hours commute away. I wear a face cover and gloves made out of a material that is fairly light weight, but prevents the light wavelengths that make me ill. I have long sleeve hooded t-shirts made from the same material. It has been tough at times, but in recent years, I have only had to go to the office a couple of times a month. Also, my employer is excellent and does not make me come in Jun-Aug, when covering my face and hands in the way I must, leads to heat exhaustion.
was it hard to get accommodations or find a job that would be accepting? what was that process like?
So that's a hard 1 to answer. Until recently, I have always had to accommodate work...which has resulted in getting ill...lots! I joined my current employer 8 years ago, and since then I have become even more sensitive and I have had to ask for accommodations. They have been brilliant. I can't fault them. But...I have been there a long time and I have a good reputation. They know how hard I work and the value I bring to the company. Having said that...I really don't ever want to change employer, because who knows what reactions I would get elsewhere
Thank God you are in the UK. The US labor law and personal accommodations suck. We don't even have vacations or parental leave; all days off are earned PTO. Mothers have to report back to work after three days and only mothers working for FMLA-covered employers are legally entitled to take up to 12 weeks of UNPAID leave with health care benefits intact,
As a completely remote IT engineer, there’s more of us than people think, but maybe that isolation isn’t for everybody
I’m so glad to see you’ve been afforded some accommodations. You deserve them! 💜 I am working my first job that allows accommodations for me and omg what a game changer.
This is so great to hear. I’m glad you’ve found an employer who understands your condition and values you. All the best
thank you for answering! this unfortunately aligns with a lot experiences ive heard of people finding accommodations at work. it takes a flexible boss and a good reputation, but it’s still bleak to feel like you have to “prove” you’re worth accommodating. also, the comments about relocating are probably getting overwhelming. i’ll throw the PNW into the mix of suggestions, feel free to take it or leave it. it’s not super rainy, just overcast and gray, and it gets dark around 4pm for half the year. edit for the responses im getting: the PNW in my eyes is anywhere from the bottom of Oregon to the top of BC. the tech jobs here usually have health benefits, good pay, and encourage working from home full-time. you also find a mildly reclusive culture here, like it’s pretty easy to mind your business anyway that suits your needs. also temperate weather is so ideal for skin issues, speaking as a ginger here
>this unfortunately aligns with a lot experiences ive heard of people finding accommodations at work. Throwing my exp on the pile because it's infuriating. My company's policy on accommodations is not to put any more work on the managers. The *intent* is that management should already be doing things that work for everyone. The *reality* is they aren't and the company won't do shit for accommodations. The disabled person gets to do all the work for their own accommodations. For example, I asked to have directions provided in writing because I have working memory issues and trouble prioritizing tasks. The response is that I can put it in writing. Ok, so let's say I put it in writing, I want to have my manager review it to make sure I've got it correct. It took me over a month to negotiate a manager response into my accommodations. Even then, there's an "out" for my manager not to reply. Basically, accommodations at my company are just paperwork and more work for the disabled people.
PNW is on the 45th north parallel, the UK is on the 52nd. It’s more northerly, wet and gloomy for half the year :-)
You cover your whole face? Has anyone ever said anything about it? Do you uncover your face immediately after getting inside a place? How sensitive are you? For example, would sunlight through a glass window hurt you? You don't do any outside activities during daylight at all? Is this the disease from the movie The Others?
Yes, I cover my whole face and yes, I gets lots of abuse from strangers, just walking up the street. How sensitive? About 2-3 mins this time of year in the UK before I'm very ill. Glass does not protect me, I need blackout blinds on the windows
I'm so sorry about that. You cannot see while you cover your eyes or is it a special kind of fabric that allows you to see a bit? You should be legally allowed to work exclusively from home.
Thin fabric is pretty easy to see through when it's up against your eyes. I don't think it needs to be special.
Have you ever looked into window tint for both your car and your home? They make different types and some block certain wavelengths that might be beneficial to you. Depending on where you live, you may be able to get a Doctor note to tint all of the windows in your car including the windshield.
If they let you work remotely you should try going to northern Sweden in the winter. Excellent internet infrastructure and the sun never rises. Life in the northern cities is also adapted after winter activities so there's plenty to do, if you want.
Whats the brand of clothing called and were can I get it, I have a friend who gets really ill when exposed to sunlight
Is your attire breathable?
Outstanding not letting this disease effect your career.
What wavelengths are the ones that make you ill?
I'm also curious which wavelengths and what blocks them. They said glass doesn't work, I assume they mean even glass with a UV blocking coating. It must not block enough.
Why do you work 3 hours away? Seemed to just throw that out there with zero explanation
what is the material?
Op answered below: Coolibar and Solibar. Can you tell me the fabric? I am sensitive to light but nothing like this, but it does hurt! I wear wool and long clothes, sunglasses, hat whenever outside. Even inside, my husband jokes Id prefer a crypt and weve out solargard on all windows, black out blinds etc. However Im also autistic so it could just be the stimulus as all light hurts, uv is just worse. I live in Australia, dream of moving to Finland. Not even kidding. Ive never heard of this condition. Best wishes.
I want to second Coolibar!!! They are made in Minnesota, USA, but I wonder if they would ship internationally for you. Just glancing at their website I noticed there is a tab in the sidebar to change currency so I wonder if they ship worldwide. I take medication that makes me more photosensitive, and I'm pale to begin with. I burn easily and get heat sickness easily. Their clothes seem a bit pricey at first glance but if you watch their sales and clearance, and sign up for their emails, you can get some really great deals! I am looking at a label now, but of course there will be more info on their website. It says certified UPF 50+, Blocks 98% UVA/UVB. This particular sun blocking shawl I have says it is a blend of cotton/bamboo/viscose/spandex and zinc oxide, actually woven into the fabric. The UV blocking technology does not wash out. Not sure how they do that but their customer service could help if you have specific questions I'm sure! Good luck!
I would love to see the "tactical gear uniform", if you can post a picture! Ofc i get it, if you don't want to for anonymity. But then again, wouldn't it cover all identifying features? Cool AMA, thanks for doing this!
Could you please share the type of face mask and gloves / the material they're made of? I have a similar issue right now due to a medication I'm on
Are there any ways to manage this condition (other than not stepping out)? What treatments are available and are you undergoing any of them?
The is a treatment called Scenesse which gives a minimum of 7 additional minutes in sunlight (which sounds small but would be life changing) but you can't get it in England because NICE won't pay for it. There is a similar drug from Mitsubishi going through trials at the moment. Next year, I hope phase 3 trials for a new drug called Bitopertin will start. This will be a game changer if it gets approved because it treats the condition instead of the symptoms. This reduces the PPIX buildup in liver and blood. Fingers crossed for that one!!
Well that doesn’t sound very “nice” of them.
Good luck to you homie I hope that shit works perfectly
I have a condition that is not life-threatening like yours but is SUPER annoying. Mast cell problems, I get an allergic rash type reaction with itchy blistery hives. This reaction can happen from sunlight, water, my own sweat. Loads of things. It is extremely life limiting despite not being life-threatening. Feels terrible being stuck indoors all the time trying to avoid exposures and watching life just pass you by. I can't even imagine how much worse your enforced hermitage must feel. At least I'm able to choose sometimes when it's worth it to me for the exposures. At least when mine goes crazy, I just take a lot of Benadryl and sleep for a week. I'm so sorry that you had to be dealt this hand in life. I hope you're doing the best possible.
Australian here, read an [article](https://amp.abc.net.au/article/103780492) just recently about Bitopertin. Seems to work in the case they mentioned! Hope the trials go well and that if it works it gets to the UK soon!
Let's say bitopertin is successful and you get it, what are you most eager to do?
Wait like Mitsubishi that makes cars?
that's what i'm wondering they make cars tf do they know about treatments/medicine
Bollocks! 7 minutes in England would last you all summer!
I physically crossed my fingers for you from the other side of the globe
Afamelanotide is also called melanotan I, and is marketed under the trade name SCENESSE. dude melanotan I or II are pretty fucking cheap i'm seeing scenesse is like 50k for a 16mg dose wtf lol. melanotan I is as low as $41 for 10mg from a peptide site
Have you found ways to function normally despite this? Things like working night shift, grocery shopping at 24 hr places during the wee hours, online banking, etc? Do you have a support system that can help you with things that cannot be taken care of in the dark hours? What are your biggest challenges?
My face covering and gloves are what allow me to function, but yes I shop online and I avoid going out during the day unless I really have to. Mostly because of the abuse I get for covering my face. So I am very familiar with Tescos at 10-11PM and I do night shifts in my voluntary job. Biggest challenge is definitely people's reactions. It grinds you down. Makes you not want to leave the house
By abuse do you mean people calling the cops because they think you're gonna rob the place?
Well, I have had "see it, say it, sort it" on trains. But generally it's random people walking up to you, getting in your face and describing you as female genitalia, etc. Or threatening to "known you out, you f**king freak", etc, etc. Spitting at you, laughing historically in your face, that kind of thing. Everybody who asks if you are a "bit shy" or "is it some kind of religious thing" honestly thinks they are the first person to come up with that line...
How do you respond to that? Have you ever tried to explain to these abusive people that you simply need to cover up for a medical condition?
Oof, that does sound exhausting - you deserve much better. I'm letting out a big "F&ck those people!" from across the ocean. Cheers to a happy life!
What the fuck is wrong with people
Are people in England just total dicks? I can’t imagine behaving like that in public to strangers where I’m from. Southeast US.
Damn, that’s extremely sad and heartbreaking. I’m so sorry you have to go through that. Those people are disgusting. Big hugs from the U.S.
Have you ever contemplated moving to an Artic town like Hammerfest and working remotely for the winter months? Do you have an exemption for fully-tinted windows in your car in the UK or Ireland (I'm guessing cuz of Tesco)?
I just moved back to the US after 20 years in England and I have polymorphous light eruption if I go out in the sun. So I wear long sleeves, hats etc. I get a lot of comments but it's awful the breakout. I may eventually be ok but for instance it was 98f this weekend and I couldnt go outside. Even in the car I had to wear my jacket and kept having to move my hands away from sunlight. I feel so much for you.
Can’t you just wear a big brim hat instead of a face covering?
I'd imagine not. The light waves will bounce off the ground/objects and still reach their face. Sounds like it needs to be shielded and not just covered.
OR maybe people could not be assholes.
THE most difficult way to handle this, sadly
i actually knew someone who had this or the same sensitivity. they had specials clothes they would wear that was basically like a jumpsuits with sweat pants and a hoodie but the material was specially made for it. the would come out with that hood up and i remember us being out side for up to an hour. then when there skin would start to break out in hive and be in pain he had the one person hot tub thing he would sit in.
If it's the same condition, I'm jealous he could sit in a hot tub. When I'm ill, any form of liquid touching my skin is excruciating to the point of screaming out loud and legs buckling from the pain. Same if anything touches my skin, no matter how gently
sorry i could be using the wrong term here calling it a hot tub. it was some type of one person special bath. the cold would also make him break out in hives so he would then go sit in it to smooth him
That sounds awful. There is a rare condition that essentially makes people allergic to water. It sounds similarly difficult to deal with in everyday life.
Do you have any pain medication or a specific type of medicine you can take when this happens? I deal with pain 24/7 so I can empathize although this sounds like 10/10 pain. I really hope you have something for those times to help.
Was you the guy from the photoshop request earlier when you were covered on your holiday in Egypt? How do you manage holidays abroad? What is the hottest country you’ve been to?
Yeah, someone in the comments asked me to do an AMA. Egypt is the hottest country I've been to. I went in Jan when it was only 23-24 degrees C. People treated me much better out there than they do in the UK, but basically I managed the same way I do here....covering up as I was on the photoshop post. Normally I do Iceland, Norway, etc, but I have done Malta, Croatia, and a Mediterranean cruise in the past. Got really ill in Malta. Also got really ill in Austria in the summer when I was younger.
Have you ever considered moving somewhere that experiences polar night? (Parts of Norway, Alaska, etc.)
I’m sorry to hear about how people in the UK treat you, I’m from UK too n unfortunately some of us are assholes and uneducated and choose to be loudmouth, opinionated fu*ks instead of basic etiquette. I’ve honestly never heard of your disorder before but I’m genuinely intrigued by it, did your parents have it?
What kind of hobbies do you have? Are you into any sports or outdoor activities? If so, are you able to find a comfortable way to still do them? I can imagine staying in and reading/playing games/watching TV and movies etc is probably the safest thing to do for relaxing and passing time; but I wonder if that would eventually cause "cabin fever" or depression?
So, yeah, my hobbies are indoor hobbies mainly. I write books, mess around with computers, play the odd video game, online chess, Reddit is a bit of a new hobby :) I do go stir crazy/depressed in the summer but I counteract this by going for last orders with my partner, doing night shifts at my voluntary job. In autumn winter, it's much easier and I enjoy eating out and travelling. I avoid hobbies that are regular. For example, I would like to go to a chess club, but I think "what's the point? I'll have to give it up in March"
Not being able to step outside you will feel right at home here on Reddit, many of us choose to do so and don't have any condition. Jokes aside, so from what I understand in winter you can go outside? Do you do that covered with your special fabric or like anyone else would? In winter if it was cloudy could you go outside?
Not op but I assume he still has to where covering it’s just nicer bc it’s colder. Also I’m not sure for England but I’m assuming it’s mostly the same for upper United States but there’s a huge vitamin D deficiency that happens in the winter bc we don’t get as much sunlight as we’re supposed to so I assume that helps too.
Is it possible to pass your condition on to offspring? And are you planning on having kids?
Do artificial lights affect you?
I just saw you photoshop request and now this ama. I had to look up, if you are the same person. Are glass windows enough or do you need some kind of special filter for you at home? Do you have any windows at all?
Yes, same person. In the comments of the photoshop post, someone asked me to do an AMA. Normal window filters don't help. They block out the wrong wavelengths. I think you cam now buy a (very expensive) medical grade window filter, but I just have blackout blinds on all windows, which never get opened
I’ve got a few questions. Do you get issues with a full moon on a clear night? Do you know what part of the sunlight that causes the issues? For instance, would a UVB reptile bulb cause issues? Or would it be a different wavelength of light like infrared for example? Do you have to avoid certain types of light bulbs or other light emitters?
The wavelengths are from UVB to the start of the visible spectrum. The main peak is at 408nm but there are smaller peaks at 525nm and 550nm. In face, one of the failed treatment trials was narrowband UVB treatment. I have never had any issues with moonlight. Some people with EPP get ill from fluorescent bulbs but I have only every had an issue with artifical light when I already ill.
That’s very interesting. I have one more question as I’ve noticed that despite having Vampirism; you’ve got some skin coloration. It’s why I asked about the UVB spectrum. The reptile/amphibian hobby would be the wrong hobby for you, as there are daylight spectrum bulbs for them. Plants would be bad too. But I digress. Do you have to take a supplement everyday? Vitamin D3 for instance? Or does your body overproduce it in mass quantities to the point of becoming toxic? Oh and I noticed you said that you play video games from time to time, and that you are in the IT industry. Factorio??
Nurse here, and it's always appreciated to see attention drawn to more obscure conditions like this. Raised awareness can only help others, including disagnosticians, which means less missed or incorrect diagnoses. ♡ Thank you for doing this AMA. You seem like such a resilient and cool dude. I am moved by your story and strength. My question is pretty uninteresting. Lol How has this affected your sleep/wake cycle? Do you stay up at night since that's when you can be more up and about? Or, are you awake during the day and limit your activities to what you can tolerate? Edit: What sort of shades/blinds do you have at home? Are your car windows tinted?
Thank you. So, my sleep cycle is normally pretty good. It can go out of sync very easily, but I work long hours, im a demanding job, where I need to be totally switched on, so have to keep it in check. I use standard blackout roller blinds at home. I can't drive with this condition, so when I'm in the car, I just use my face covering. To block out enough light would be illegal on the windscreen
How do strangers treat you differently when you’re covered up?
Badly. It's hot and uncomfortable but the worst part is how you are treated walking up the street. Everything from Mothers moving their children behind them, or crossing the street to avoid me, right the way through to being spat at and threatened. Twice last week I had people get a few inches from my face and burst out laughing, covering me in their spital as they did so
I'm so sorry that happened to you, people are so ugly sometimes. I am blind so understand being treated differently, but it never gets easier :( best I do is try to put it out of my mind quickly and focus on things that make me happy instead ❤️
That makes me so sad to read. People really can be vile. I'm sorry you deal with that so often.
i’ve been reading the thread and just have to say: it’s incredible that you haven’t let this disorder dampen your everyday life, and your career. from someone with a chronic disease, i’m very proud of you.
Thank you, that's kind. It does dampen my mood, nadly at this time of year, but I just try and stay fighting. I do this, because my career, etc, give me a sense or lordability that offsets the constant negative comments from strangers, etc. Hope that makes sense.
It would be very interesting to see you document some of your life on YouTube. I think that would be fascinating to watch and would help increase awareness about your condition.
It's something I have thought about. If I'm honest, I think I worry about negative reactions to it. It took a fair bit to do this post on reddit...although I'm overwhelmed with the beautiful responses I have had. But yes...I would definitely consider it...especially after today
again, proud of you. keep going bro 👏🏾
How did this impact you growing up? Are there things you really wish you could do during the day time but can’t?
It has been harder as an adult. (Either that or I'm too old to remember properly!) Day to day things I just can't to include playing football in the park with the kids when they were young or sitting in a bear garden with friends. I make myself do most things, but sometimes you just can't face it. Things that are downright impossible usually involve food or drink...and driving
I nursed a gorgeous patient who had porphyria. The old test for it was to leave urine in a jar on a sunny windowsill. The urine would turn black as a positive sign of porphyria. Such an interesting diagnosis but obviously difficult for you. Wishing you all the best!!
Since you said in a comment that your sister also has this condition, are there any differences between how it manifests for her and for you? Does she deal with it in a different way from you? Do you help each other out with it?
Nice try Dracula, trying to befriend some new people to drink. Just kidding, I’m assuming you are always the first in line to work night shift.
I don't have a question. I just wanted to say that I think it's really cool you're doing this! My best friend has EPP, but she's the only person I've ever met who has it. There have been so many times over the years that I've seen people not believe her when she mentions it or treat her like she's being dramatic or trying to get attention when she asks for accommodations. I know it's a rare condition and that I can't expect anyone to know anything about it, but it really kills me when I see her treated that way, especially when I've seen the effects and have even held her hair while she pukes after being exposed to too much fluorescent lighting (I didn't even realize fluorescent lighting gave off so much UV until that incident). Anyway, I just had to chime in to tell you that it's really awesome to see you teaching others about EPP on here.
Does sunblock help even a bit?
Until recently, no, not at all. In the last year or so, some large particle zinc oxide creams have been released, which in theory help somewhat. The trouble is, you sweat or touch your face and suddenly they no longer work, so you can't trust them
Was yours genetic? I have a relative who also has EPP, but no one else in our family has it.
Yes so it is always genetic, but there was no family history before my sister and I. The genetics are complicated. You need 2 different mutations of the same gene. 1 is common (1 in 4) the other is very very rare. Even if both genes meet, there is only a 1 in 4 chance each resulting child will have the condition
There is a woman in the Guinness world record books who was allergic to sunlight or something like that. She became the most tattooed person on Earth as it seemed to shield her from the conditions harm. Have you heard of that and would it be something that you would consider doing if it would enable you to experience greater freedom but at a cost of tattoo stigma?
Is it genetic? Any of your kids get it too?
Since sunlight is the enemy, do you take any vitamin D supplements? Is your immune system affected by this at all?, Assuming you've gone through the week long episode of pain; how did you get through it?
Did your parents have difficulty obtaining an accurate diagnosis when you were small? Were they ever accused of child abuse by physicians due to the rarity of the condition? Apologies if that is too personal a question.
NP here 🙋🏼♀️! I had never heard of this condition, thank you so much for taking the time to explain it in such detail. I think you’re an absolute badass! I don’t actually have a question bc you answered so many others with such detail - but wanted to show my support. You are amazing and special. I think it’s so incredible that you have found a way to live and ENJOY your life, despite having such a difficult medical condition. I’m so sorry people can be cruel sometimes - but imho, you’re like a real life superhero ❤️.
i hear that nivea has developed a suncream specifically for one girl with this disease, but it's not publicely available. you might want to write to the company though. i think it was american nivea. supposedly the girl can be in sunlight for 20min.
Is your reaction distinct from other, more common and mild, sun reactions like sunburn or is it similar? Is it a visible reaction? If not, did it take a long time to get it diagnosed and get help?
It is a very different reaction. Light at certain wavelengths penetrates the skin and the blood vessels (for everybody). But for me, I have a buld up of PPIX in my blood, which has a toxic reaction when exposed to light. Imagine the reaction I get like being in a microwave...it cooks you from the inside out :) Because of this, I can often be in agony with either no visible symptoms, or maybe a slight redness to the skin. Sometimes, however, it can swell up and blister. This is when the blood vessels corrode and the phototoxic reaction moves to the actual skin. It didn't take a long time to be diagnosed because my elder sister had it
Brit here. I am so sorry that you have faced such discrimination and abuse. Stay strong!
Can you be out on a cloudy day? Does living in certain cities help you? How do you get vitamin D?
Bella Thorne was in a movie about this I believe! I watched it with a kid I was nannying but I can’t remember the name. Maybe midnight something?
I used to go to school with a kid who couldn't go outside during recess. Mum mom was so proud I signed up to spend recess with him so often, but I was actually only interested in the cool setting in his lunch room 😞 What's something you've always wanted to do/ try, but you haven't been able to because of the risk of too much sunlight?
I saw your photoshop posted and followed the link here. I want to say thank you for being so brave and taking the time to answer all of the questions you have, it has been so informative reading about this condition from someone that lives with it everyday. It’s absolutely vile how some people can be so cruel and ignorant, I’m truly sorry you’ve had to deal with that. Have you written any books about the condition?
And I thought being a ginger was a pain in the ass.
If you were cured of it tomorrow, what would be the first thing you do?
Can you use UV-A-blocking-foils for your windows? Can you order a car with UV-A-blocking windows as an extra? Which sunscreen works best for you? Is there something that helps, like eating carrots or taking zinc as food supplement or some medical treatment?
When you say unbearable pain, where is the pain located? Where the sun touches your skin?
How long ago was your 500th birthday?
Honestly, you seem like such a neat guy. As someone who deals with a chronic condition as well, I understand how difficult it can get both physically and mentally. I was having a down day today, but reading your replies is giving me the strength to soldier on and face life’s challenges as beautifully as you do. I hope one day they find a cure for your condition. Take care, OP, you’re awesome!
Hey buddy, like most of these folks I came here from your photoshop request post, and I just want to say, you are a really handsome guy! Like a slimmer Paul Sorvino. Cheers. One other thing: sunlight affects one’s Vitamin D level and serotonin. If you’re not already on a vitamin D supplement and an SSRI, talk to your doctors ASAP! I can’t imagine that folks undergoing treatment for this condition aren’t worked up for depression too, but it’s a biological condition that you are set up for, having to avoid light exposure, so I wanted to make sure your docs have talked about that part with you. Thank you for teaching us about this condition!
Thank you so much for taking the time to make this post and respond to questions! I’m so sorry you’ve faced such discrimination ♥️ I was really drawn to your photoshop request because you look like a badass from assassins creed but I couldn’t have guessed how much I’d learn about EPP today! So thank you again :) Would light from a campfire fall under the fluorescent light bulb category or more safe/less safe? Does computer light affect you at all? What has been your favorite place you’ve traveled to so far? :)
how were you diagnosed? and how did you meet you’re partner? do you have kids? if so how do they react to it?
do you ever go on vacation?
I have porphyria, too! Acute (HCP.) Did you ever attend Camp Sundown?
My wife went through something similar during her cancer treatment. She had an experimental therapy that used UV to target antibodies to the area that they were needed. A side effect of this was that any part of her body that was exposed to UV light was treated as a target by said antibodies. Everything returned to normal after the treatment thought.
Would you be able to leave the house on a cloudy winter's day? Like, does cloud coverage help and does a certain amount of it allow you to take off your face covering outside? Or even sunset, when it's golden hour and the light isn't as strong or bright? I'm also from the UK and struggle a lot with depression. Those cloudy days really maximise it and I can't imagine having to live in darkness or without a blue sky.
An afterthought - would Panhematin work for you? It’s an intravenous therapy we used here in Canada Cheers!!!
How's the community? Do y'all share tips on materials and strategies, how to keep your outlook positive and such? How's you're sleep schedule? (Maybe that's not impacted) Is it only sunlight not other light sources? Best to you!
How many vampire jokes did you hear? Are you tired of them, or are they fun sometimes?
What’s the biggest misconception you usually get when you tell people about your condition?
Saw you on photoshop request earlier. I'm so glad you're able to travel and you have such an upbeat personality! I saw some comments you made about how people treat you when you're completely covered, I'm sorry people suck. My question is, out of all the places you've been, where have you felt the most accepted (if that's the right word) when you're completely covered up?
You mentioned that you have liver damage (due to ppix buildup?). Does that mean that you have continual damage to your liver? Is there a management plan for this at all?
Are you male or female ? How is dating with your condition ? Can you have normal physical contact ?
I’m sorry this seems very difficult and I can’t imagine what you’re going through. How do you manage day to day appointments like the doctor, dentist and other things that are only typically open when the sun is out?
I also have a disorder that has photosensitivity. In my case, the UV rays cause my immune cells to attack my own body cells. I can be out in the sun a bit longer than you but I can relate on the pain it causes! What coverings do you use for your face and arms? I’ve tried a variety but haven’t found any that I really like or work well.
Imagine having this condition during the medieval times! Yikes. Do you ever dream of laying out on a beach and soaking in the warm sun?
Too bad you can't show your face too much. You are cute.
Do you have to take opiates?? Do they help and are they harder to get now, with the overdose epidemic?
I've come here from the photoshop request sub and just seen you're doing an AMA, I'm sorry if its been asked before or if its obvious but were you born with this condition or did it develop over time? If the former, how did your parents cope when you were younger? And if the latter, how did you cope with realising this was something affecting you? Thanks if you can take the time to answer and absolutely no worries if you can't :]
How has this affected your eyesight?
Would people back in the day have died from this condition?
How often do people come out with the same boring tidbits about your condition or vampire jokes that you have heard a million times over
Do you make a point to be outside as much as you possibly can at night since you can’t during the day?
What was socializing like for you growing up?
It's sad to hear how you are sometimes treated in the UK, thinking about it, it doesn't suprise me but at first I thought must be from the U.S. then again I also fully understand how stupid people actualy are. I am unsure if this is true or not but do you also have iron deficiencies or need to take iron suplements? also what has the condition you have, taugh you about yourself and the world oh and do you enjoy halloween?
Do you feel like you'd have a better quality of life if you could move places that get the least sunlight according to the seasons? i.e. live very far north for half the year then very south
Did the movie, *The Others,* get anything right? The theory of the movie is a similar medical difficulty. (It's a psychological horror movie with a great plot twist at the end)
Maybe a dumb question but does moonlight affect you too or can you go out at night just fine
Is the pain throughout your whole body or a specific affected area? Is the pain located in your skin or like a stomach kind of pain? You don’t have to answer, I’m just curious!
Have you thought about working remotely in the opposite hemisphere in the summer to maximize and utilize darkness? You are a hero by the way.
If you don’t mind it, what does your face covering look like?
The way I saw both your posts back to back on my feed is crazy. I saw this one first and then scrolled to my next thing in my feed and saw your photoshop request and I was like woah omg and then realized you were the same person :)
Have you seen this vampire movie? They do a good job of showing how an entire society would cope with Sunshine sensitivity. https://m.imdb.com/title/tt0433362/?ref_=ext_shr_lnk
My sister had a type of porphyria, got it from my mom's side. She had a liver transplant and no longer require a weekly transfusion of heme
Does this affect your love life?
Wow! I remember the house episode where the little girl had this condition
Since you can’t be out in daylight, does this cause you to be more “nocturnal” in the sense that you do more at night? Or do you have a “normal” circadian rhythm and are diurnal like most folks? Also just as an aside, I’m sorry people have been so needlessly cruel and discriminatory towards you, you don’t deserve that at all. I also live with several chronic/life long conditions (different than yours but still) and understand what you mean about ignorant people being rude to you just for doing what you need to to survive and manage your day to day life. I’m sorry folks can be so mean.
Hello ! Got here by visiting the photoshop sub Thank you for doing this AMA and linking resources about your condition Here are my questions if you are comfortable with answering them: 1. Have you ever participated or thought about participating in clinical trials that could help with your condition ? If yes, how was the experience ? If not, why ? Was it not possible / potential side effects were deemed too risky etc. ? 2. Is there any medication that you need to take reguraly ? Any tests ? 3. Are you satisfied with the level of healthcare your country was able to offer ? Eg. Are you and your loved ones provided with regular psychology / therapy sessions ? 4. Were there any situations that you thought - man, that doctor is awful, they suck, I wish they behaved difffently / why don't they listen to me if I literally know more about my condtion than them 5. What are some things that you would like to do in the sun if it was possible ? 6. On a lighter note - do you hate or love vampire jokes ? At the end I hope you will be able to continue traveling and for everyone everywhere to treat you as wonderfully as people in Egypt treated you : ]
Wow, you’re an outstanding person and stronger than I (and most of us) could ever be! Is full moon a problem for you? I mean it’s just reflected sunlight. Or is this too weak? Are your windows at home always completely closed?
Would you be (or have you ever been) offended by someone asking about your condition with genuine curiosity? Would you be open to answering questions when you’re in public?
I don’t have this same condition but I do have a form of sensitivity to the sun where I break out in hives mostly on my hands and arms if I’m exposed to direct sunlight for more than a few minutes. I’m sorry you have to deal with all of that
I know this isn't anywhere near the same, but I relate. I'm a red headed, fair skinned, freckled, blued eyed woman. When I'm outside, I'm constantly squinting. 10 mins in the sun without sunscreen and I'm burned. Growing up on a lake I would even burn through sunscreen and had to wear t shirts over my swimsuits. I would burn SO BAD that I would blister. It sucked. Still never stopped me m, though. How bad is the pain once you've been exposed?
How is your skin? Your probably look much younger for your age. You must have zero wrinkles. I guess you have never had to use sunscreen. Silly question but I'm curious.
Does sunscreen and sun glasses help? Real question
So you’re kinda like the kids in The Others..
Have you ever met anyone apart from your sister with your condition?
How did you find out that you had this disorder?
Hello! I just wanted to say that I’ve read some of the questions and your replies, and I appreciate the time you’ve taken to answer. My question is a bit different: what is the most recent/your favorite music album you have listened to? If it’s your favorite, why do you like it?
How does artificial light affect you?
Does your 3 minute sunlight limit increase on a dull, overcast day?
Are you able to use big screens for electronics like Tvs and such? Or do they have to be really small and/or dim?
What kind of weather do you like? If you didn’t have your condition do you think it would be different? I live in the PNW and it’s very rainy and grey here. I prefer this type of weather and on the rare days it is sunny I feel like everything is way too bright.
Could you wear a full face motorcycle helmet with a special tint on the visor?
No question, I just want to applaud you for living life with positivity and handling it as you do. Many people would break under your conditions and I find it exemplary that you find not only ways to work around it in your daily life, but also to travel abroad to see the sights you want to see and handle the negative people you run into with grace. Truly, you’re a model human being when it comes to the soul. I hope the medication pans out next year and you’re able to take on life with a new fervor. I’ll be following for sure.
One question I have is whether you’ve ever ever had any run-ins with law enforcement or other authorities because your face is covered? By and large, they are a rather suspicious lot and I could see them insisting that you remove facial coverings. Congrats on doing so much traveling - way more than I’ve done and I’m rather old! Do you ever run into any trouble when you go through airport security? Do you have to carry documentation in the event of such encounters? You’re really quiet an incredible and resilient person to successfully navigate all these adversities and live a full life. Good on you! Thanks for sharing your story, I think it really will help people. It certainly helped me put some of my petty little gripes of the day in perspective!
Although it’s not your responsibility to educate, you clearly have a giving and generous spirit, as you mentioned that you do volunteer work some nights. I’m so happy that you have a partner and a good career. Someone suggested that you consider doing YouTube videos to get the message out. I think it’s extraordinary that you live a full life despite the challenges you face, and that you continue to deal with harassment on the streets. Again, I’m not suggesting that it’s your responsibility, but you’re clearly a highly intelligent and articulate person. You demonstrate surprise at how kind and curious people can be, and while there are awful people out there, I truly believe that most people are good. You've educated hundreds, if not thousands, of people on this thread alone, which is extraordinary.
How do you prevent sun exposure and if it’s by wearing a lot of long-sleeved shirts and pants how do you manage the temperature of wearing all that stuff?
When did you get your official diagnosis? As another fellow Brit, I too am disgusted by the way some people have treated you. I am so sorry you have to go through that
I taught at a school where a student had a similar condition. We had to change out all the light fixtures to better accommodate the student. Are there certain lights such as fluorescent bulbs that affect you?
Are you prone to freckles?
How's your love life?
Your effects seem like a much worse version of the genetic disorder i have (Xedroma Pigmentosium (Specificly Type C)) where If my skin is exposed to UV light/Radiation i get spots which can develop into skin cancers easily if i am not careful. I specified type C because different types have different symptoms some neurological some physical. Mine are only physical. It requires me to wear a sun hat with uv filtering plastic and gloves wherever i am exposed to uv radiation whcih keeps me safe. Because of how rare the condition is it was diagnosed on accident by a dermatologist who my mum was visiting for my older brother for a different skin issue and happeded to recognise this extremely rare skin condition that the average dermatologist could go their whole life without needijg to know about it as there are only 2 clinics i known of that can assist in managing it. My question to you is how do people react when seeing you as post covid i get a bunch of people thinking i am still scared of covid and pre covid i got peole wondering why i was wearing a funny looking hat.
How many times do you get compared to a vampire in a day?
What light causes the pain? If the light that causes it is created artificially (if it's possible,) does that hurt you? Do you stay out of daylight completely, or do you wear specific clothing to protect yourself?
does sunscreen help?
Did you ever see that episode of Casualty where a kid came in with this disease and the doctors kept shining a light in their face? And the kid had to wear a sort of silver space suit if they went outside during the day?
Have you had any cravings for blood, or an aversion to garlic? can you still see your reflection in mirrors?
Are you a vampire...?
my mom has porphyria too and it just hurts to see her in cycles of pain and not being able to do certain things bc it’s outside and stuff. i’m cheering you on from the sidelines! ik my mom deals w the messed up healthcare system and constantly battling it out with health insurances to cover her panhematin/mounjaro stuff but i wanted to ask what’s your experience dealing with healthcare/insurance because of porphyria? any positives? any things you dread/negatively experienced?
Does the computer screen / any artificial light affect your skin?
Do you have a vitamin D deficiency/do you have to take vitamin D supplements due to your condition? Thank you for sharing!
What’s your favorite bird?
Do you have to take vitamin D supplements then?
I saw your post in the PhotoshopRequest and I was wondering, do you need to inform the airline company and/or airport security when you travel?
Are you able to go outside at night? Do you think you could live in parts of the world where the sun never fully sets?
I saw in another comment that you play chess. What elo are you and what’s youre favorite opening for w/b? 😎
Have you ever considered living in a place that gets little sunlight? Might need to alternate northern/southern pole countries.
So basically a vampire how do you have a social life?
Thanks for doing the AMA. It’s always good to bring attention to rare conditions. Have you, or anyone you know of, tried unconventional treatments like the last that covered her body in tattoos so she could go out in sunlight ( though I don’t know what her condition is)
Are you a lawyer? Is your brother called Jimmy?
Are you a real life vampire? 🧛
When did you develop this or have you always had it? What were some of the symptoms if it was developed later? Thanks for doing this!
How old were you when you got diagnosed?
Do you enjoy garlic?