A Day in My Shoes: The Small, Everyday Problems of EB

Lena Riedl avatar

by Lena Riedl |

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Many people living with rare disease often worry about health issues, government support, insurance, and being accepted by society. But we may also face minor, everyday problems.

I was born with epidermolysis bullosa (EB), a rare condition that makes my skin and mucus membranes very fragile. With the wrong kind of friction, my skin will tear easily, leading to blisters or wounds. When I was little, I was often covered in bandages from head to toe. Luckily, my condition improved during puberty. I still wear bandages constantly, but I am not completely covered in them anymore.

Because of this, I’m used to wearing clothes and shoes that are more comfortable and practical than chic. I’ve often needed to wear open, soft shoes, or leggings instead of jeans. I can’t wear certain sandals, and boots are hard for me. This can be difficult when I want to dress nicely.

As I’ve gotten older, I’ve learned to accept some aspects of life with EB, such as uncertainty. However, there are things I just can’t accept. This brings me to an issue that’s been nagging me the last few weeks.

Disclaimer: This is not a tragic problem, and I know that there are far more concerning issues. But it’s still something that I, and many other people living with EB, stress about sometimes.

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I was looking for the perfect boots. As someone with a skin condition that causes me to blister at the slightest touch, one can imagine it’s not easy finding shoes. I tried on so many pairs. I couldn’t even get most of them on because they weren’t wide enough. I knew if I forced them onto my feet, I could get seriously hurt trying to take them off. (Been there, done that!)

I grew frustrated and sad. Why was it so hard to find boots I could easily slip on? But just before I gave up, I found the perfect pair, which will make a great Christmas present for myself.

In this case, my story had a happy ending. But this is only one example of how “normal” things are harder for me to enjoy.

When I compare myself with my sister and my girlfriends, nails also come to mind. Because of my condition, I’ve lost all of my nails. Luckily, my fingers haven’t completely fused together, which can happen with EB, and I can mostly use them normally. But I dream of being able to get a nice manicure and pedicure.

Is it OK to feel this way?

I hardly ever complain about EB, much less “superficial” problems like being unable to wear fashionable shoes or have trendy nail art. Frankly, I feel bad if I do complain. I think I shouldn’t be worrying about things I don’t really need, and should feel grateful instead. I live a happy, independent life and have found ways to do many of the things I want.

Don’t get me wrong, I am very grateful for everything I have. I’ve learned to see the positive side of living with a rare condition. Life with EB has brought me many good things! But I want to be able to express other feelings, too.

So, can I?


Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.


Andrea Pett avatar

Andrea Pett

you can certainly feel this way! And I agree. As the mother of an 18 yr old son with EB, I run these things through my head all the time-the little "superficial" things that he should be able to experience, wear, enjoy...that he can't,,,and those things matter as a teenager, and at any age.
But you have a great positive attitude!
Thanks for sharing this

Lena Riedl avatar

Lena Riedl

Hey Andrea,

thank you so much for your insight as well. It's so nice hearing, that it is okey wanting to experience this "superficial" things - because like you say, they can matter too!!

I wish you and your son all the best! :) hope to read you again soon!!

kathy lariviere avatar

kathy lariviere

I am with you on the shoe or boot shopping! I am 68 and still go through feelings of wanting "dressy" shoes. My younger sister would wear new shoes or sneakers for me for a few weeks to break them in for me when we were younger. I found crocks the lined ones also to be the best foot gear for us. Wide enough toe box for bandages to fit comfortably. Keep up the positive attitude..

Lena Riedl avatar

Lena Riedl

so good to have a sister to "help" us with these things also! ;-).
Great that you have found your perfect shoe - and thank you for the tip!!

Thank you so much for your comment!!
Wishing you all the best from Vienna! :) Hope to read from you soon!

Todd Ennen avatar

Todd Ennen

I have EBA , and like you I struggle with clothes and shoes that don't fit too tight. I've been dealing with this disease for about 8 years, and reading your articles was great, could read them all day long, made me feel less alone with my disease and the constant struggles we deal with. Take care.

Lena Riedl avatar

Lena Riedl

Hey Todd, so nice to read from you! It's so nice to be reminded, that we are not alone!! :) Hope you are doing well and would love to read from you again! All the best from Vienna, Lena


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