EPIDERMOLYSIS BULLOSA

Epidermolysis Bullosa is a group of hereditary skin conditions whose hallmark is blistering of the skin in response to heat, friction, injury or rubbing.  There are four types of EB and we have the most mild form, Epidermolysis Bullosa Simplex.  The faulty genes that cause EB Simplex are the ones that produce keratin, a fibrous protein which is supposed to make the outer layer of skin (the epidermis) tough and resilient.  Mutations in our genes prevent the keratin proteins from binding together, causing cells in our epidermis to become extremely fragile and easily damaged.  As a result, our skin is less resistant to friction and minor trauma and blisters easily.

So what does this mean?  Well, it means a lot of things.

#1.  Our blisters are not like your blisters.   They will continue to grow unless we make a small hole in them and let the water drain.  This process itself is painful.  Blisters usually heal within several days and are generally painful throughout the healing process.

#2.  EB mainly affects our feet but we can get blisters anywhere.  The usual culprit is physical activity.  Running, walking, even standing still for a long period of time will cause blisters.  On a hot day, I can get blisters on my hands from pushing a shopping cart through the Harris Teeter or blisters on my neck from where a necklace rubbed.  The adhesive on a bandaid can cause its own blisters.  Scratching a mosquito bite will cause blisters.  Pretty much anything causes blisters.

#3.  It’s a helluva lot worse in the summer.  Duh.  In the winter, we can do so much more.  We can run around the playground and take bike rides around the neighborhood.  It’s not perfect, but it’s a lot better.

#4. There is no magical pair of shoes.  Some shoes are better than others (for example, you will not find a pair of heels in my closet) but any shoes, worn long enough will cause blisters.  Me, I’m a ballet flats girl.  But not just any flats.  The sides have to be so soft, you can completely collapse them with one finger.  My boys love Crocs.  I don’t get it.  All that rubber just screams blisters to me, but for some reason, they do well on the boys.

#5.  What can you do that we can’t?  Run, jump, exercise, ride horses, ice skate, play sports (except for swimming), wear any kind of hard shoe (ice skates, high heels, athletic shoes for example), walk long distances (which in the summer can be as little as 1 block), go to amusement parks, take bike rides in the summer, stand at a kitchen sink doing dishes for an hour, walk across hot sand on a beach, join the military…I could go on and on but I think you get it.

I’m not going to sugar coat it.  It sucks.  It is always hard to be different than everyone else.  Growing up, I couldn’t play soccer or field hockey like my friends.  I couldn’t go to Busch Gardens when someone invited me. I cried when I cut particularly painful blisters.  I missed days of school because my feet were so bad I literally could not put on a pair of shoes.  I couldn’t do a lot of things that other people could do.  And when you are young, it is excruciating to be outside looking in.  You learn to handle it better with age.  You learn how to say no.  You learn that the disappointment will fade.  But there were still plenty of days and nights when I pushed myself well beyond my limits because I didn’t want to say no.  And so there were mornings when I would wake up and have so many blisters that I had to crawl on my hands and knees just to get to the bathroom.

One of the toughest parts of EB is that it is a largely “invisible” disease.  I remember vividly being at a Whole Foods in Arlington when I was 22.  It was a hot day and my feet were sore and the only available parking was in a satellite lot across the street.  For most people, that’s no big deal.  But for me, on that day, it was.  So I used my temporary handicap tag.  The one I keep in my car and try never to use because I hate the looks I get from people when I do.  On this day, I didn’t have a choice.  As I was loading my groceries into my car, a man on a bicycle stopped beside me and started berating me for using a handicap tag under false pretenses.  He was condescending, arrogant, and vitriolic.  I found myself desperately trying to explain my condition with tears streaming down my face.  He could not be bothered to listen because, to him, I was a perfectly healthy and active 22 year old girl.  I didn’t have crutches. I wasn’t in a wheelchair.  I wasn’t toting around an oxygen tank.  I have an invisible disease that no one has ever heard of.

Lest you think we sit around and cry all the time, let me tell you about the upside.  Because I could never just blindly follow the crowd, I had to learn how to be independent at a very early age.  I had to learn to be comfortable with being different, with being myself.  And although it was painful, it made me stronger.  It made me confident.  It made me empathetic.  It made me less likely to judge others by their appearances.  It made me appreciate the friends who would hang back and sit on the sidelines with me instead of running onto the playground and the ones who bowed out of the group trip to the amusement park and suggested we go to the movies instead.  It made me appreciate the teachers who give Jack and Will piggyback rides when their feet were sore.  It made me appreciate the colleagues who suggested we go to the crappy bar in our office lobby for happy hour instead of the cool one 4 blocks away because they knew I couldn’t walk that far.  It made me appreciate what it means to care about someone more than yourself.  It made me who I am.

And that’s not such a bad deal after all.

For more information, visit:

DEBRA 
NIH Epidermolysis Bullosa Information
Stanford School of Medicine EB Clinic

37 Comments

  1. Yep. I can identify with the pushing yourself too far and the invisible disease…I have Lupus but I try very hard to forget it (and then kick myself later after I’ve overdone it…). Sorry about your experience with the idiot on the bike. Next time, use mace. 🙂 (Okay, I’m kidding…sort of…)

  2. I have sensitive feet that blister easily, but I’m sure it’s nothing like yours. Anyway, I also favor soft shoes. If you haven’t, try the leather (not suede or fur models) shoes in Sam Edelman’s Felicia line. They are the best I have found!

  3. Thank you! You told my story and it’s all true. I’ve been looking for support and ideas on living with EB but feel ridiculous complaining when you see people inflicted with EB far more severe than mine. It would be great to hear solutions to our everyday dilimnas. I’m also curious how EB simplex is affected by menopause. So many women complain that their skin thins and I wonder if it will be worse with EB

  4. Thank you for telling your story of EB! I too have EB simplex and grew up in Northern VA!
    It’s such a tough disease to deal with, because just as you said people look at you like you are “normal” and don’t understand that almost everyday of your life you are in pain.
    I have persevered through many things with my EB including running and triathlons. I am embarking on my first 1/2 Ironman and I’m terrified! I keep reminding myself people have done greater things while dealing with even greater physical disabilities and I am determined to complete my goals!
    Thank you again:)

  5. I under stand you so bad it hurts even trying to type this but when I saw what u have said it was like reading about myself no matter how old I get (31) it’s hard every year to find shoes soft enough if any of u out there has got and suggestions I would love to here from you with any tips or advice I am member of debra as well go to London every year would love to hear from people who are going though what I am. They also said it would get better with age but mine seems to be getting worst x hear is to finding a cure for this horrible skin condition xxx

  6. All my life I struggled with this . And along with it.. Weight gain . Thank you sonics for posting this article. It is true what you say about the” invisible disease ” mine was only recently diagnosed but I remember going through public school and failing physical education . Being called lazy when u are crying in pain. And the horrible comments when u are parked in a disabled stall and it ” appears” as if nothing is wrong with you . Thank you again for sharing your experience as it completely mirrors mine .

    1. Thank you for reading Charlene! There is something about knowing we are not alone that makes it a little better. Hugs to you…

  7. Great article and my sympathies to all. My father had EB simplex and was a paratrooper in WW2. When we were kids we would just develop “hard skin” and callouses on hands and feet. I played Rugby to a high level which was ok on cold wet days but not on hot dry days. I used a whole shop load of Vaseline and covered any really vulnerable bits with bandaids or tape. The time I realised what skin I had lost was afterwards in the shower. It does sting a bit. The good news I suppose is that I heal pretty quickly. Day to day I wear thin silk or Bridgedale brand liners and woollen socks. And if I am trying a longer walk I will use a Scholl or similar lubricant stick. My message is try not to let this awful problem spoil your life. It can take over your life and must not. By taking good precautions, (and managing our weight) we can cope with many things OK, Hope that helps
    Keir Mac

    1. A paratrooper? Wow. How incredible. Thank you for the tips – I am always looking for new suggestions! And I agree totally with your sentiment. I tell my bots yes it’s hard. But it’s made me who I am on the inside and I wouldn’t trade that for the world. Thanks for reading!

  8. Omg I’m in tears. It was like I could have wrote this. I have been suffering my whole life without knowing what was wrong and my new dermatologist Said she was certain this is what I had and I came across your blog and omg I feel relief. Thank you

    1. I am so glad you finally have a diagnosis Katrina. It can be such an isolating disease and there’s something about knowing we’re not in this alone that helps. There are a couple of Facebook groups for EB that are helpful and I’m always here if you have any questions. Hugs…

  9. I’m quite new to the eb life!! I’ve been with my partner for almost 9 years and never really understood the disease..we now have a 3 year old son who also has eb and I’m super terrifed of the future!! Everything I read about it is negative and I’m an emotion reck!! My partner has educated me on how to pop them but I hate absolutely hate doing it. He just had a huge blister on the hard part below his big toe I popped it and the next day it had sealed back up and was like twice the size it was the day before..then he was playing outside and it popped!! Omg that was the worst cry I have ever heard in my life..and for it to be coming from my baby “oh lord” I need some advice!! Anyone with advice please help!!

    1. Hang in there Kalia. I know it’s hard to see your baby in pain – much harder than your own. We don’t actually pop our blisters although a lot of people do. We use fine point manicuring scissors (I recently started buying surgical grade scissors on ebay for cheap). The scissors make a bigger hole so the blister doesn’t fill back up again. Also icing sore spots sometimes can prevent blisters from forming. But the best, and hardest, thing to do is learn when to cut off physical activity before feet get sore. Hugs to you…

  10. Hi can I be cheeky and ask how your skin was when you were young?? My daughter is 3yrs old and has EB simplex and she is very severe with it she can’t walk so need’s a wheelchair and her skin is very bad with blisters and raw wounds she’s on lots of different medicines to try and help.. we have been told with her type of simplex she should be better than this and live a “normal” life which for me as her mother is very hard to believe seeing what she goes through daily x

    1. Although we have never been typed, I think we have the mildest form. DEBRA has some great resources and depending on where you live you can get assistance and, most importantly, support. Hugs to you and your baby…

  11. Reading this was like reading the story of my life. I am 27 and have had EB Simplex my entire life. I love what you wrote and I am thinking of printing it out just to show people who don’t understand when I explain my condition. It is so very frustrating when you say “I can’t walk that far, I will get blisters” and receive a response saying “Well if you do just put a Band-Aid on it.” And since you have EB you know that will not help and probably cause more blisters to form!
    I will say that I have found 3 remedies that seem to help the contain the blister issue. As you probably know once it changes color from pink-ish to white-ish it is far less painful and my family and I call this process “aging the blister”. I have 2 remedies to speed-up the “aging” process. 1. I use Band-Aid brand blister Band-Aids which actually “age” the blister faster than just letting it “age” on it’s own. I know I said Band-Aids make blisters worse but not these ones, they are made with different material and really stick so there is no issue of rubbing or moving around like a normal Band-Aid does. 2. I soak my feet in water with Epson salt. Sounds strange, right? When I was really young my parents and I found that whenever I would go in the ocean any blisters I had would not hurt nearly as much as they did before. Since we didn’t live near the ocean we decided to try to make our own little salt water solution, it really did help and also gave me a huge relief from the pain and discomfort I was feeling. And in terms of forming blisters; I call them “newbies”; I found something called Blistop by Flexitol. I would spray it on a forming blister and it was kind-of like hairspray for the skin, somehow it would stop the blister from growing larger. It felt like it would restrain the skin’s affected area. Now, I am not saying these remedies fix the blisters but it does help manage the situation.
    Since I am know that I will begin to ramble if I don’t wrap this up soon; I just want to say thank you for sharing your story. And you should also know you are not alone in the consistent frustration of people who can’t relate or even understand the severity of our situation. I understand completely and honestly that’s all I have ever wanted to hear… Thank you

    ~Holly

    1. Thank you so much for reaching out Holly! It really does make it better to know we’re not in this alone, doesn’t it? And thank you for the tips – I am totally going to try them all! Hugs…

  12. Thank you for sharing this. I have EB as well and everything you described is exactly my life. I went to doctors when I was a child, but the doctors could never figure out the disease so they never did anything for me or diagnosed the disease. I am now thinking about going to the doctors again for it to be diagnosed. Now that I’m older (34) it hasn’t gotten any easier and it is hard to do anything with my family and friends. Just having a handicap plaque would be helpful. Again thank you from a fellow EBer.

    1. Thank you Fiana. It can be so hard and so lonely because it’s a disease that is so far out of everyone’s wheelhouse. Try to find a dermatologist who can write you a note to take to the DMV to get a handicap placard. I only use it when I have to but it does make a huge difference, especially in the warmer months. Also there are some Facebook groups that are often very helpful in terms of learning new tips and tricks. Hang in there and know I’m always here if you ever have any questions!

  13. Very nice read. Myself and several family members have EB simplex. Very close to our lives as well. Growing up and living in the pacific nw is very helpful. I lead a very regular / normal life 8 to 9 months out of the year due to the weather. I try to avoid places like Las Vegas. I’d be happy to help with questions that anyone may have. Several generations of my family have EB simplex.

  14. Hi guys I am the mommy of a 5yr old son with EB simplex, I was wondering if anyone had any shoe or sneaker recommendations, right now I just buy these outdoor slippers called foamtreads since they open up wide and he doesnt have to squeeze his feet in. But I think he is quite sick of them lol and he is in school now (sigh) the feet are so troublesome for us, any suggestions guys?

    1. Some of the comments above have great suggestions. What I have universally found is that everyone is totally different. My boys have never had luck with sneakers, at least for more than an hour at a time. Both my boys wear Crocs every day (they’re loose and wide) but we have a few pairs of slippers/moccasins that they wear when their feet are sore. Would love to hear everyone else’s suggestions too!

      1. I’ve had EB all my life and now I am 32. I have tried a lot of different products and what I have found for me is changing shoes everyday. I have 5 pairs of shoes (Converse All Stars, GEOX Nebula, Adidas Climax, Nike Running shoes and can’t remember the last pair) but what you have to realize is once you start feeling a little pain or “friction” on your foot, its time to change socks and shoes. I have made it to almost 6 months at a time without having a blister on my foot by doing this. Though moving to Florida, it definitely is a little harder but its finally manageable for me now by changing shoes everyday. I use WrightSocks which have been pretty good so far but I will be trying some new pairs to see how they are.

    2. It may sound strange but I have found All-Star Converse Sneakers to work the best with my condition. I think it has somethings to do with the thin cloth tops and the flexible sole underneath. They may bother him at first but once he breaks them (I find this happens after just a few wears) they may help. I know they may be a bit procey but I can say first hand they worked really well for me! Hope this helps and good luck!

  15. Thank you so much for sharing. I am 38 now and was diagnosed as EBS recently. Your story is exactly same as my story-a life with EBS. I look perfectly fine and healthy but crying inside. It affect my personality as well when i was younger. Now I can even openly tell people about my symptom and doing volunteer at Debra to help patients with more severe symptoms. I just hope that more people understand about EB and people like us don’t feel that they are alone.
    – Aya

  16. Wow, I’ve never identified more with an article. I have a two year old son and a second son on the way. My two year old and I both have EB simplex. Your experiences mirror so many of my own and I am so thankful to know that feeling of “no one understands completely” is false. Thank you for writing this. I appreciate your insight and honesty on a level I can not describe. I hope you and your family are doing well and enjoying life 💗 Much love and support to all of you!

    1. It’s always good to feel like you’re not the only one, isn’t it? Especially with a disease like this that is so rare. If you want to chat or exchange ideas or even just vent any time, my email is LOP@luckyorangepants.com. So glad to have you here ❤

  17. I have EB, I hear you, shoes for me are the biggest challenge. I’m 44, no one understands, no one cares to understand, doctors have never heard of EB (at least here in the UK), my whole maternal family have it, and I’ve never met anyone outside my family with it. Growing up is the toughest time for sure, I just hide it away for the most part (toenails, fingernails are the worst, especially in summer when you really can’t wear sandals). I’m thankful that my 7 year old didn’t inherit it…best shoes btw – Coach sneakers/tennis shoes (‘Barrett ‘were the best style, and I begged Coach to not discontinue them, but had no reply) – no seams/stitching inside – pricey I know, but I can actually walk for perhaps 1-2 hours without any kind of pain.

    Best wishes
    Nikki

  18. Hi, my little one is two and is sooooo badly blistered on her feet. I usually use a lancet to make a hole and drain her blisters but I read here that you use scissors, how small do you make the cut? I’m an Esthetician so I am use to working with skin but have not ever used scissors on it. Thanks for writing this article and thanks to all those who commented I learned so much!!! just need to figure out the scissors and shoes for her.
    Thanks again,
    Brandi

    1. It depends on the blister honestly. Just a small cut to let the blister drain and not fill back up. I use surgical grade scissors (I’ve found those are the sharpest). Shoes are always an issue with us. I wear ballet flats all the time but it’s much harder finding shoes for my boys. They swear by their Crocs!

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