Camille is 21 years old and is a student in management. She lives in Brittany. She suffers from recessive dystrophic epidermolysis bullosa, which was diagnosed when she was a few months old. She shares with us her experience with this disease.
Can you summarize your story with epidermolysis bullosa?
I was diagnosed with recessive dystrophic epidermolysis bullosa when I was a few months old. I didn’t have any wounds on my body in the beginning, but I had some on my tongue, which was caused by the friction of my pacifier and feeding bottle. It took a little time to make a diagnosis. The wounds on the body started to appear a little later when I started to crawl.
There are no treatments, apart from the painkillers when there are crises. Otherwise, I have daily cares, or every 2 days, with disinfectant baths, bandages, and where we pierce the bubbles. I have also started going on water cures since last year. It allows me to have a few months during which my skin is in a much better shape, and the itching disappears. I moisturize my skin with all sorts of creams. The Hydrating Gel Plus HS was recommended to me by another person suffering from epidermolysis bullosa, and that is how I discovered it. I think that it moisturizes very well, it has a pleasant texture, it penetrates well and doesn’t leave an oily film on the skin. I have gotten used to using it and it moisturizes more deeply and on a longer term basis than other creams.
What consequences has epidermolysis bullosa had on your life?
The disease has stopped me from doing some of the things that all children do: gym classes, outings at the swimming pool… I also stayed a lot at the hospital, and I missed some classes. In middle school, I was advised against following a general field, because of my absences. But I still decided to take my High School Diploma, and I got it. It just took me a little longer than for others, like for my management degree. You can achieve a lot by taking the time, making arrangements, and fighting for it.
What is the most painful story that you have experience linked to epidermolysis bullosa?
Middle school was a difficult time for me because of how the others looked at me. In 6th grade, my class linked itself against me: I was mocked because of my disease. Children can be very though at that age.
On the contrary, what was you most pleasant experience linked to epidermolysis bullosa?
The moments when I am at the Debra association: when we are all together, despite the disease, we don’t think about it. At the beginning, I didn’t really like going there. But now, when I go there, we are all the same, we forget about our disease, we are normal. I really like these moments.
What advice linked to epidermolysis bullosa would you give to someone suffering from the same disease?
Don’t isolate yourself, even if there are some times when you don’t feel normal. You need to stay open to others, to see people. It is important to keep your spirits up, to feel like you fit in in the society.
What information sources would you recommend to a person suffering from epidermolysis bullosa?
Without hesitation, the Debra association: you should go there, meet people with the same illness, to get some advice. It is my parents that discovered the association when I was a baby, it helped them to get a lot of advice from parents in the same situation. There is also a Facebook page which is quite active, and it is great to share with other people.
What did epidermolysis bullosa change in your life?
It taught me to put things in perspective. Even when the cares are too much of a burden, you cannot give up. It developed my tenacity, my strength of character. I would probably not have the same strength of character if I didn’t have epidermolysis bullosa.
If you had a message to send to persons who don’t know about epidermolysis bullosa, what would it be?
For those who are healthy, they are unbelievably lucky, and they don’t always realize that.
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