October 25-31 is EB awareness week. Epidermolysis bullosa is a group of rare genetic skin conditions that result in easy blistering of the skin and mucous membranes. Blisters and wounds can be caused by the slightest of touches, the skin is very slow to heal. It is usually referred to as the “worst disease you’ve never heard of” or skin as fragile as “butterfly skin”

There are different subtypes and severities. While I am mostly able to live as an independent adult, EB very much consumes every aspect of my life. I was born and raised in the United States, immigrated to Canada in 2015 and have had a vastly different experience in the health care system regarding my quality of life. There is no current cure, treatment for EB consists of bandaging the skin for protection and preventing infection as best as possible. For more info visit www.debra.org Let’s talk about it!

My Proof: https://i.imgur.com/8Dtx6SK.jpg https://i.imgur.com/E8wQckI.jpg https://i.imgur.com/23jZC0x.jpg

https://i.imgur.com/yvXxnwd.jpg

Edit: I really want to thank every one who asked questions, commented, or messaged me. This one my first time doing anything remotely like this, and it went better than expected. Remember to be kind to people, and if you can’t be kind, keep your comments to yourself.

Cheers.

Comments: 301 • Responses: 53  • Date: 

CDM2017573 karma

I have EB (acquisita) and didn't know there was an awareness week! It took 6 years to get a diagnosis and I thought I might lose my mind. I finally have it pretty well controlled, and have even had some healing, which I didn't think would ever happen.

Still, the treatment is a whole lot of meds with a whole lot of side effects, and the idea of losing insurance or ending up with a bad policy keeps me up some nights.

I'm curious about others in your life. Who knows you have it? How has it affected relationships?

scarswithoutastory392 karma

To be honest, I was 24 when I learned there was an awareness week about EB, and your sub-type must be even more rare, b/c I haven't heard of Acquisita.

With discovering new types of medical supplies and better antibiotics, I too have been able to manage even my most chronic/painful wounds. Its an everyday process taking care of wounds while trying to prevent new ones.

I am the only person in my family with it, Everyone who knows me, knows I have some sort of skin condition, b/c I have scars everywhere, if you look close enough, you'll notice I don't have finger/toe nails, lashes, and some other EB related marks.

If you're asking about romantic relationships? I am in a long term relationship with someone who is very understanding of my restrictions and I have always been open about it. I have dated others, again being open about it.

as far as friendships, middle school sucked, but as an adult peers were able to look past it more so.

if you're down to chat, you can always pm me.

builderbob31154 karma

What is intimacy like for you? Can you have sex? Do you feel the need for personal touch like hugs or cuddles?

scarswithoutastory221 karma

Id say my partner and I have a normal sex life. There are obvious limitations, like how firmly he is able to grab me. He has to be cautiously aware where my chronic wounds are, like both my underarms and how he grabs me there when he hugs me ect.

kwpang136 karma

Sorry to seem creepy and go into detail, but it affects only your external skin?

Are your internal genitalia affected / brittle?

What about the semi internal genitalia like the labia and clitoris?

Also do you know what happens if a male got it? Would the penis skin (seemingly part of the rest of the skin) be brittle, making sex painful?

Again, apologies for the bluntness. I'm overwhelmed by curiosity atm and just had to ask. You don't have to answer if it's uncomfortable for you.

scarswithoutastory210 karma

Some people with EB have damage on the inside of their esophagus, mouth ect.

For me personally, it does not affect my internal genitals. (Labia and clit)

And I can’t speak for how it does or doesn’t affect men’s genitalia.

peacenskeet20 karma

Can women with EB have children? Would the pregnancy be extremely damaging to the skin around the belly? Also birthing I imagine would be.... destructive

scarswithoutastory14 karma

Yes, I’ve known of women with different severity types go through pregnancy and birth. While I don’t know their birth story, it seemed like a common denominator those woman had positive pregnancy experiences as their skin did better during pregnancy.

theInfiniteHammer98 karma

What do you do for a living?

scarswithoutastory184 karma

Before Covid, I worked in office admin. Having a job that does not require a lot of walking, as my feet are moderately affected.

Eazy300674 karma

Welcome to Canada 🇨🇦! When you say you had a vastly different experience with the health care system, do you mean that in a negative way or positive way ? Did our system treated you well?

scarswithoutastory173 karma

Hey thanks!

Hope I can clarify here: As an adult in the US once I turned 18, I qualified for medicaid. Very limited options, basically only what was available in my state.

Which I had been referred to a few specialists, that were unfortunately unable to really treat me b/c of how rare EB is. An example of when I was still on my dads insurance at 17 years old, my family doctor referred me to an ENT for my closing ear canals, whom then referred me to another surgeon (out of state) to do any treatment. The local ENT had to write a letter the insurance company stating it was necessary and only then was it approved to be done. (that surgeon ended up changing his mind while I was on the operating table.)

Once I had received my PR for Canada

My options didnt feel limited. I was able to find a family doctor rather quickly and getting the ball rolling for getting referred to the doctors I needed. Like a new ENT, dermatologist, optometrist, And even a doctor out of province that specializes in EB. What a world of difference it has been.

privatewander-er36 karma

I’ve heard that it’s difficult, if not impossible, to move to Canada with an expensive pre-existing medical condition. What was the process like for you? You’re giving me a ray of hope!

scarswithoutastory95 karma

It isn’t an easy/quick process to immigrate to Canada.

I really don’t know how I managed still, but I fell in love with a Canadian and he sponsored me. I didn’t move with the intention for health care.

If it had not been for that, it wouldn’t have been an option.

TiboQc16 karma

Always wondered, as a Canadian immigrant myself married to a Canadian, who thought about using sponsoring. When sponsored do you still have access to your province's healthcare, unemployment help, etc? Those questions scared us as this is for 5 years.

BTW I ended up using the PR route by myself and has since become a citizen.

scarswithoutastory12 karma

Yes, while my application was pending, I didn’t have access to the health care, I paid out of pocket if I needed to see a doctor (and it happened on a couple of occasions) before receiving my PR. Congrats on your citizenship that is my next goal as well. 😁

TiboQc4 karma

How long was your application using sponsoring? Must be stressful!

Thanks, becoming Canadian was one of my proudest moments of my life. Arrived when I was 14 so full of memories and education from my home country (France), but spent most of my life here and feel way more Canadian.

scarswithoutastory5 karma

My application process was a little botched from an incompetent lawyer so in total 2.5 years.

TiboQc2 karma

Happy for you it's all behind now and good luck on your citizenship, it's a lot less stressful, except for the exam, but simply learned everything by heart and use apps to train and it'll be super easy.

scarswithoutastory3 karma

The exam was stressful? Or the process was? 😬

privatewander-er2 karma

Yikes, this would be really tough. I have MS and medication is ... expensive. Like over $100k a year. The drug companies have assistance programs, but not sure how much / how long they would cover in the case of pending immigration.

Thank you for sharing so much of your story and your experiences.

scarswithoutastory3 karma

Medical supplies are very expensive.

There is a program that helps me pay for it.

Thankfully.

Bacon_Bitz4 karma

Suddenly dating apps all start searching Canada...

scarswithoutastory2 karma

Ha! We didn’t meet on a dating app. 😏

PocoChanel56 karma

Does it affect you only in certain places, like, say, psoriasis? Or is all of your skin affected?

Do you have any regrets about moving to Canada?

scarswithoutastory163 karma

Some place are more susceptible to wounds, like my feet from walking, my underarms have been chronic wounds since I was a toddler from my parents picking me up, and the constant friction of moving, clothes rubbing, and the location makes it almost impossible to keep a bandage on.

My ears used to be a huge problem, I had chronic ear infections as a child/teen that left a build up of scar tissue and as you can imagine, hearing problems, (which has since been operated on and healed well)

No, regrets moving to Canada, I have found a team doctors that have truly changed my life. I just miss my fam in the states.

sometimesiamdead24 karma

I'm so glad you're doing well in Canada!

scarswithoutastory15 karma

Thank you so much. Truly!

Dampbuster42 karma

Does your body sweat? If yes, how you deal with burn caused by salty nature of our sweat

scarswithoutastory50 karma

I do sweat, but very minimal. I have to be careful putting deodorant on and not get it in the wound itself.

lilycyr42 karma

I'm still haunted by the documentary about Jonny Kennedy (The Boy Whose Skin Fell Off). Q: Can you have pets? Q: Can you swim in pools or lakes?

scarswithoutastory126 karma

ah! I remember being a teenager when watching that for the first time. I also realized at that moment the differences in severeness and that I almost felt "lucky."

I can have pets, always have growing up, cats, dogs of all sizes. Preferable shorter less shedding hair, and smaller light weight as a heavier dog saying hello to me with its paw can tear my skin off.
I can swim in pools, the chlorine water is good for my skin and wounds. (i do take weekly bleach baths to prevent new infections. 1/2 cup of bleach to full bath ratio) but i have been kicked out of public pools for making other people feel uncomfortable with my skin. understandable, so I do avoid public pools as well as lakes b/c of bacteria.

Dystempre6 karma

That last sentence really struck me. It’s isn’t understand, or acceptable to have you forced from the pool for someone’s lack of understanding. That breaks my heart

And welcome to Canada fellow PR!

Rubentje7777121 karma

I think having a policy that prevents people with (open) wounds from entering a pool is a good thing.I don't think anyone wants to swim in a pool that has someone bleeding, leaking wound exudate or shedding bits of skin in it.

scarswithoutastory41 karma

This is spot on here. Thank you.

TheD1v1s1on530 karma

Does it hurt much?

scarswithoutastory70 karma

yes, there are some wounds that are extremely painful to touch/accidentally bump. Its painful to walk without socks and shoes. The added padding helps, but keeping shoes on too long can become uncomfortable causing more irritation so wounds already there. Is just an example.

motivaction25 karma

How did EB affect your family?

scarswithoutastory181 karma

If you're asking how does it affect others in my family, I am the only one who has it.

If youre asking how did my family deal with it?

My parents had me pretty young, I was the second child and my parents divorced when I was around 6/7 years old.

My dad raised my brother and I on his own, fortunately my dad had a great paying job along with insurance, as he was able to pay out of pocket my medical supplies, and take me to a family doctor when I though I needed to see one.

It was always (and still is) a learning process for my parents and my doctors on how to treat me.

My dad helped my bandage my wounds every night until i was in 5th grade, when I thought I was capable enough to do it on my own.

My wounds would stick to the bed at night, and my dad would come pour warm water to help my un stick as pain free as possible.

My parents dealt with getting the cops called on them on a few occasions for possible child abuse.

i think they did the best they could, with the limited resources the doctor had for us.

frendlyguy1913 karma

how did it work when the cops got involved?

im assuming your parents just showed them a note from your doctor or something but im curious.

scarswithoutastory17 karma

One memory in particular we had ordered pizza one night.... I answered and paid for it.

A few hours later, I am bandaged in bed sleeping when the cops knock on the door and as about a domestic violence incident, my dad had to wake me up and I had to verbally tell the cops myself... “No, look I actually have EB, I was born with it....” see my bandages... take my word for it type of moment. My dad was not happy.

VikingVikernes11 karma

I know that feeling of wounds sticking to the bed. Blistering and tenderness. It's like frost bite but you're dealing with it all your life.

scarswithoutastory6 karma

Absolutely one of the most painful moments is unsticking clothing/bandage from a wound.....

ilikecats5623 karma

How do you manage pain? Do you use pain meds, nerve meds, anti-depressants, etc? Have you considered alternative treatments like mindfulness meditation for coping with chronic illness related pain?

scarswithoutastory39 karma

This is a good question, thank you for asking. A lot of what goes into making my skin comfortable is soft clothing and bandages. If my skin isn't terribly broken out, that usually does the trick. It has been trial and error to find the softest, seamless clothing to try and minimize discomfort. If my feet are broken out, like the picture above, it can help to take OFC ibuprofen.

Randomly, I get an awful corneal abrasion in my sleep and I'm left in bed for a week in the dark trying to get that to heal, I have gotten to the point of going to an ER (since moving to Canada) and being prescribed a very small amount of morphine/percocets to help with the 10/10 pain.

That has been on rare occasion, thankfully now I have contact bandages on hand now to minimize the abrasion from worsening when they do happen.

My skin does not to do well in humid weather and is much more easily broken out and inflamed, If I feel like I need to take a T3 to feel more comfortable, I will.

But more importantly, for me, its about trying to prevent my skin from getting bad enough for me to take pain medication at all. If I'm eating well, bandaging properly, taking bleach baths, antibiotics, and my skin is still in rough shape, then I'll resort to pain medication.

bettyp00p12 karma

When you go to the er or hospital can your skin handle the tape they use there to affix an IV for example?

scarswithoutastory30 karma

This is a good question, and No, I absolutely can not. The hospital tape is very adhesive. I bring my own kind call “Mepitac” so gentle, though pricey.

ychtyandr10 karma

You mention morphine - have you tried Cannabis? I read that you use CBD oil on the wounds, so wondering if you can cause pain relief with CBD consumption and / or THC.

If you get relief from Cannabis what are the types you would try and is a pure THC strain better for you or one with both THC and CBD?

Also, how does Cannabis affect your mental health?

scarswithoutastory10 karma

I do smoke weed, fairly often and notice it helps with pain management. It really takes the edge off and I feel more relaxed, I feel more relaxed and comfortable then I’m more likely to move around with a little bit more ease.

To be honest, I haven’t tried a a THC\CBD oil combo, though it has been recommended to me. Has added inflammation benefits ect. Haven’t gotten my hands on any yet thus far.

😁

ychtyandr7 karma

Thank for your feedback. I think you could just use a strain that has a balance between the two canabinoids versus a strain that had high THC and small content of CBD.

By the way, I want to mention how much I appreciate that you speak so openly about your condition. Must be hard to handle it and I think you must be a very song person for handling that and being able to speak about it.

scarswithoutastory4 karma

Thanks for your question.

It hasn’t always been easy to be open and forthcoming, but it is important to spread a little bit of awareness.

CDM20173 karma

I'd never thought of a bleach bath and will be keeping that idea for flare-ups. I have tried Epsom salt baths and those are pretty good. And a few years ago I moved to a house with a pool, which has been amazing - chlorine and sun every day during summer!

scarswithoutastory3 karma

I swear by them, I’ve been doing them weekly as advised by my derm. Too much bleach can dry out the skin and make it tight and painful. It really only is about 1/2 cup or less. But it works wonders!!

Sometimes I do add Epson salt as well.

Ventghal23 karma

Is the interior of your mouth susceptible to damage as well? If so, does it show as constant canker sores?

I think all the people asking questions about sex are basically asking the same thing; the skin make up is very similar. Although the skin would be under much more stress during sexual activity.

scarswithoutastory35 karma

Yes, it greatly affects my teeth. I have very little enamel on my teeth.

I can get small blisters on the inside of my mouth very seldom. But I do know that it can be common for some EB patients to have a dilation of their throat to reopen from scar tissue damage.

Damn_Amazon19 karma

I recall reading about a woman with quite a severe case who had chronic wounds all over her back from her wheelchair. I recall that she had a good response using melaleuca honey, though of course it wasn’t a cure of any sort, just a more successful topical wound treatment for her.

What have been the most memorable wound care strategies for you (good or bad)?

scarswithoutastory32 karma

Hey, thanks for your input and question. This is a good one!!

Personally, I've tried a few different medicinal honey brands and it was just not a comfortable consistency for my skin,but I know other EB people who use it as well.

I have a looot of bad wound care moments, b/c it really is trial and error in finding what is comfortable and what isn't. I still can get wrong, b/c my skin changes, what works one moment, will break me out in blisters the next.

Bad moments would include, but not limited to :P

I have put too much ointment on my bandage (telfa pad/vaseline gauze) and have gotten dressed went about my day to come home and undress and at some point the whole bandage has moved and wasn't even protecting it for who knows how long? Sometimes i don't feel the bandage shift.

Not putting enough ointment and the pad itself sticking to the wound, not realizing it and ripping it off, or having to soak it off in the bathtub. Painful either way.

For as long as i can remember I've had to bandage my whole face b/c of multiple wounds, whether on my scalp, ears, nose, chin, ect... My parents had learned to bandage my face from a skin graft when i was 4, and I still use that same strategy today. LOL

I cant use bandaids, no matter how gently I think I can take off the adhesive, it will take my skin off.

as far as best... discovering Polymem and CBD oil/Coconut oil for my chronic wounds has been amazing!

Apple_Sauce_Boss5 karma

So your face is all bandaged every day still? When you met your partner was your face bandaged? How did the romance unfold?

scarswithoutastory19 karma

Not during the day.... that would be interesting.

Only at night. For protection and to prevent itching and rubbing in my sleep.

And yes, bandaging my face for the first time in front of my SO was very scary. .... I had never told any previous partner that I wrapped my face at night.

So I thought it would be a good idea and maybe break the tension if I bandaged HIS face just to show him and maybe he would be less alarmed.

Pat myself on the back for that one still.

It didn’t scare him off 😉

Apple_Sauce_Boss3 karma

Thanks for the answer. I was like whoa if she is wearing the bandage all day it must have been a dramatic reveal when she first took it off!

Perhaps I have seen too many movies.

Forgive more questions but I suppose that's the point. It's genetic no? Have you considered having biological children? Has your partner been tested? I'm assuming it's recessive and that he could be tested to see if he is a carrier?

scarswithoutastory2 karma

It is genetic, I have a 25% chance passing down, if my partner is a carrier that chance is higher.

We plan to get him tested before planning biological kids, if any.

Damn_Amazon3 karma

Thanks for your answer!

I saw from another comment that you look for soft and unrestricting clothing. Do you purchase from Soft Surroundings? If you contacted them they may be able to point you toward their softest offerings.

scarswithoutastory3 karma

I haven’t heard of that company but I will definitely look into it thank you!

I have tried “skinnies” which is an EB medical clothing brand. Seamless and soft. But pricey.

Worth it though.

coryrenton19 karma

Is it primarily an inflammatory ailment? Do you find that symptoms ease or worsen when eating certain types of foods?

scarswithoutastory41 karma

Diet definitely plays an important role in trying to keep inflammation down. Specifically, I notice now that I'm older that it helps when I cook meals at home, try to incorporate protein, fruits, and vegetables that my skin/scars are less sensitive vs when I'm eating a lot of candy/fast food/soda ect. It can be easy to fall into a habit of grabbing for junk food. I have to be mindful not to eat a lot of it, because of that reason.

FredC1238 karma

Did you notice if you meat and dairy intake affects the wounds?

scarswithoutastory14 karma

I rarely eat red meat. And I’m not a huge milk fan.

I do eat things like chicken, Greek yogurt, cottage cheese, those dairy products, but I find those foods to be good for me.

MinnieBoombox3 karma

Does pepper and other spicy seasoning affect your inflamatory condition?

scarswithoutastory4 karma

I don’t really care for spicy foods in general, so I don’t really notice if it affects anything b/c I eat little spicy foods. Pepper is fine on my food.

fuzzycuffs18 karma

Can you have sex or masturbate?

scarswithoutastory33 karma

yes and yes.

fuzzycuffs25 karma

I'm happy to hear that

scarswithoutastory52 karma

Me too.

Stuck_in_a_daydream18 karma

Have your symptoms improved as you’ve gotten older?

My brother has EB. His skin has toughened up immensely in adulthood. Now, he seems to get lesions only in areas of high friction or where his skin is super thin, like his eyelids.

scarswithoutastory13 karma

This is a very good question! And it’s encouraging to hear your brothers EB has gotten better with age.

I have noticed that my skin isn’t as easily torn like when I was a teenager/kid. Though there are other expects of my EB that has gotten worse For example, the older I get, the more it affects my hands, they’re more easily blistered than when I was younger, same for my feet. I simply can not walk comfortably without shoes/socks/slippers on my feet. Barefoot walking is not an option.

My scalp is affected more, And I have lost a portion of my hair. Something I never dealt with had a kid, teenager or even my early adult life. Though that is more of a vanity issue.

I moved from the desert to a climate that had extreme humidity and coldness. Both drastically effect my skin in ways I never had to deal with in a climate that didn’t have season changes.

Though, I’m able to manage it all better now than I ever have, it does change and I’m trying my best to mange it. Still a learning process for myself.

anditwaslove9 karma

As someone who lives with chronic health issues, are you for universal health care? If so, what would you tell Americans who have never had to worry about it and are therefore against universal healthcare?

scarswithoutastory15 karma

Absolutely, I support public health care.

The argument seems to be something along “. well in the US there is no wait times for Surgery...” yada yada

But in my experience my options felt very very limited in the states. While yes, there are EB clinics in the States or Doctors who probably could have done the operations I ended up having done since moving to Canada.

It basically felt like if I wasn’t rich, Those options were out of reach for me.

The expense of travelling out of state just for a referral to meet a DR, let alone have any sort of treatment was simply too expensive for me.

I already have other expenses that come with EB like buying out of pocket my own medical supplies and antibiotics. That alone can be very expensive. So the added stress of finding a doctor I could afford felt impossible.

Hope that wasn’t a ramble.

whole_kernel7 karma

Are you able to take anything that promotes healing of the skin? There are some Grey market Peptides that might help. I haven't heard anything about this condition specifically but there are some conditions they can help with

scarswithoutastory16 karma

I do take mutli vitamins, and I'm more prone to be deficient and anemic.

Ive tried hair,skin and nails, collagen supplements but never noticed a real difference.

jamawn7 karma

What ways have you found to stay fit? Is swimming a viable form or exercise?

scarswithoutastory13 karma

I am rather active. I just modify my workouts to be feasible for my skin.

Like I can’t run, way to abrasive on my feet, but I can lift weights and and pace my workouts comfortably. Swimming is a great work out, but I often don’t feel comfortable in public pools with open wounds. And the chlorine can start to burn.

Arthur_Boo_Radley3 karma

Would something like this help: https://www.masterspas.com/blog/best-swim-spa/?

I know nothing about it, I just know they exist. I don't know whether you really can swim in one of those or is it just a marketing gimmick, but maybe it wouldn't hurt to try to get more information somewhere?

I'm just posting this in case you haven't been aware that stuff like this exists.

And yes, my guess is they are probably expensive, which is definitely another burden for someone who has to deal with everyday medical costs, but if there exists some sort of public place where they have something like this accessible... who knows?

scarswithoutastory4 karma

Something like that would be helpful, but as you guess pretty expensive. I do know some family that have a severe child with EB whom have gotten something similar.

Maybe one day!

stoicsticks2 karma

If you didn't get a Make a Wish as a kid, you may be able to apply for a Sickboy Podcast adult wish for a swim spa. March of Dimes also has programs to help out with assistive devices, although a swim spa may be out of their scope.

Sickboy podcasts are worth checking out for their interviews of various chronic health issues.

scarswithoutastory2 karma

Thank you, I’ll look into them.

parquet76 karma

I’m a lawyer and do work for a small pharmaceutical company that is now doing clinical trials on an EB treatment. Are you aware that this work is being done and that there is the possibility of better treatments coming?

scarswithoutastory5 karma

I am! There has been some promising trials for those with EB. Some trials are for only certain subtypes, but nonetheless it is very optimistic.

Cloudypi5 karma

Have you ever considered participating in a drug research study? Or have you already done this? What was your experience like, if so?

scarswithoutastory2 karma

I have thought about it, I need to meet certain criteria like age, subtype, severity, etc.

And have not gotten an opportunity to try one.

scarswithoutastory4 karma

I realized shared the same photo twice.

Top of my foot: https://i.imgur.com/E8wQckI.jpg

ParkieDude3 karma

Thank You for posting

I was five years old when "my body rejected my skin". Doctors didn't know what to think of it. My sister remembers me rolling over in a hospital bed and my skin just staying on the sheets.

I was the kid who stayed inside, couldn't do sports. Wore Dr. Scholl sandals and white cotton socks year-round. If my feet sweated (enclose shoe) made it worst.

Cortisone finally controlled it, they told my mom it would stunt my growth, so at 6'3" I'm the shortest of my brothers.

Never did get a medical name for it, but just some odd autoimmune disorder. Thyroid shut down when I was 12, started taking replacement hormone.

What a crazy life this has been. I'm still going!

Take care of yourself!

QUESTION: What prompted the move to Canada?

scarswithoutastory2 karma

Hey thanks! Glad to hear you are doing better yourself.

I was in a long distance relationship with a Canadian, and we decided I would to Canada vs. Him moving to the states.

ParkieDude2 karma

Wise choice!

I have a hard time with cold weather, hence like Texas.

I tease my wife I need to move someplace where is is warm enough I never have to wear clothes. Some fabrics snag my skin, tearing it. Lotion helps, but have to be very careful. Technical fabric shirts and shorts helps, but cooler weather base layer of Merino wool works.

Are there any fabrics you prefer? I'm wanting to do fall/winter hiking hence buying and trying different materials, but gets expensive to buy something, wear it once and give it away. (wash it, donate to Salvation Army).

I did manage to learn to run a few years ago. Finally took swimming lessons, learning how to swim. Did a triathlon,telling my wife I am 60 going on 6 years old (I never learned to throw a football, nor play baseball). Family of super athletes, and never took P.E.

Accept Adapt Adjust. Keep moving.

scarswithoutastory3 karma

The cold weather is not comfortable for me either.

I was 25 when I moved to Canada and experienced my first long freezing winter.

Layers. Layers. Layers. Are so important to keep you warm. But for myself layers are painful, clothes seemingly bunch under the other and causes friction.

I keep it minimal with layers and stay inside a lot of the winter.

9ut3n-t493 karma

How are you effected by those marks?

scarswithoutastory7 karma

I get starred at pretty hardcore in public. That doesn’t bother me.

Mostly. But, my scars or active painful marks effect how I’m able to walk, sit, do anything comfortably.

If I have a huge blister on the back of my leg, I probably can’t sit down and avoid it. If I get a mark on my ears from my headphones, I’ll improvise and put a little bandage there, adjust the fit, to make it work.

I find a way to work out whatever breakout I’m having, with bandaging and a positive attitude to go about my day.

jfduval762 karma

Never heard of that condition before, hope you the best. I’m wondering, if you have a bf/gf...he/she basically can’t touch you ?

scarswithoutastory2 karma

Thank you.

I do have a long term partner. He is very understanding and patient.

Sex isn’t out of the question, if my skin is more broken out, he just to be gentle and avoid areas that are blistered.

NefariousSerendipity2 karma

Cats or dogs?

scarswithoutastory3 karma

I love both, but it isn’t a smart idea for me to have a cat, their nails are like needles and I end up with scratches all over.

I have a small dog. 💕

calcium1962 karma

I've been working on research on the eye complications of EB. Have you had any eye problems related to abrasions or ulcers? If so, what was the experience like? Have you had any success with treatments? Any long-lasting effects?

scarswithoutastory2 karma

This is a very good question. Yes, I’ve dealt with many, many corneal abrasions. They started when I was in high school, and my dad and I thought it was b/c I poked my eye in my sleep as my eye lids don’t close all the way.

When that would happen, I’d be in bed anywhere from a couple days to a week. My dad would take me to my paediatrician and she would drop some neon drops in affected eye and shine black light over it and confirm, yes there is a scratch here are some drops. OTC eye lubricant helped keep it moist. It really does feel like there are shards of glass in my eye and I can’t get it out. That would happen around twice a year. It got more frequent as an adult and I realized It’s being caused by myself opening my eye lid (when waking up, tossing and turning) that b/c of my eye lids not closing all the way they are extremely dry and being scratched at the surface. Eye drops, eye packs, pain medication, repeat until it healed. It leaves damage on my eye each time, causing my vision to be affected.

When I was 28 I had a very bad corneal abrasion causing me to go to the ER and that Dr, sent me a referral to an optometrist and I was given a contact bandage..... IMMEDIATE RELIEF. I was able to move my eye and blink without causing further damage. It is extremely difficult to keep your eyes from moving, therefore prolonging the healing process.

Now, knowing this info, I know next time to immediately request a contact bandage. In my experience they usually start out minor and progressively get worse even using eye ointment at night and drops during the day.

In 2019, I had my worst corneal abrasion I had ever had. Again, started out very minor. Woke up, little pink and discomfort but I’m able to go into work. Through out the day is does get worse, just from simply using my eye. I planned to go to an eye doctor after work explaining my disorder and the situation, truly expecting this doctor to pop in a contact bandage and understand the disorder and scenario. He declined the contact bandage and told me it’ll get better and EB and the eyes do not correlate, and sent me home. I did the wrong thing and balled my eyes out in disbelief at how stupid that was. I also regret not taking my SO with me to maybe back me up. But, again, I really thought this EYE doctor was going to see my appearance, my scars, teeth, eyelids, nose, and everything else that made it make sense that I indeed have this disorder and pop a contact bandage on a clearly irritated eye.

It took 5 Doctor appointments for a Dr to agree to put a contact bandage on. Which, as you may imagine magnified the severity and pain. I’m out of work, I’m in bed and I can’t do anything except lay as still as possible and hope my eye doesn’t get worse.

I should mention the ONLY reasons each doctor refused to put a contact bandage on was 1.) lack of knowledge on EB itself. 2.) fear of infection because it has to be kept on for multiple days at a time. So instead I’m prescribed about 3 eye drops to try and heal and prevent infection.

I do not know why it took so long for a doctor to agree this time around, but I was thankfully referred to a specialist who gave me a prescription of these contact bandages to have on hand, when needed. As since then, which as been since September 2019, I have needed to use one of those bandages. Again started out very minor put one on the morning of and had it in my eye for xx days and it was immediate relief. I didn’t miss work, and didn’t deal with any pain or worsening of my eye, because it creates a barrier and protects the surface. So blinking or anything doesn’t scratch over it again and again.

Now, over time having about a handful of these happen in each eye it has done some damage and has affected my vision, esp at night. I don’t prefer to drive once it’s dark.

I am sorry if this was a ramble.

I guess it really does matter what kind of doctor you get.

TL;DR yes, yes it absolutely effects the eyes and contact bandages are amazing.

HouseMouseMidWest2 karma

How do these affect it? *Hard water *Olive oil / coconut oil *Specialty soaps *Sunlight *Clothing material I’m sorry if my questions are invasive- I’m really curious and sending you happy thoughts! Thanks for sharing

scarswithoutastory4 karma

Thanks for your question!

My dad did install a water softener when I was a kid. I don’t have one in the house I live in now, and while I can tell a small difference, it’s not drastic.

Coconut oil I use everyday mixed with CBD oil. I don’t use olive oil on my skin.

I don’t have any sensitivity to laundry soaps or dish soaps. I prefer bar of soap in the Bath (shower head is too harsh on my skin) over shower gel.

Clothing needs to be soft and as seam-free as possible

Felipe_AP-43 karma

What do you think about meditation? I've heard of people who have cured apparently chronical diseases thanks to it.

scarswithoutastory20 karma

IF only it was that simple?