Testimonial - Alexia & epidermolysis bullosa

Alexia, 35, is a young woman with epidermolysis bullosa, a rare disease which strongly affects the skin as well as internal organs.

In spite of her disease, she is constantly looking for new activities and experiences. In her constant search for innovations which can help improve the quality of life of people suffering from epidermolysis bullosa, she is the first person with this disease who tested the Skintifique Hydrating Gel Plus HS, which she has adopted since 2015.

She is a true role model for curiosity and high spirit, and she accepted to be interviewed so that those who don’t know about epidermolysis bullosa can discover this condition, and those who are concerned with it may benefit from her experience.

Can you introduce yourself in a few words?

My name is Alexia, I am 35, a community organizer, single, without children.

What skin condition do you suffer from?

I have a dominant dystrophic epidermolysis bullosa.

Can you summarize your story with this affection?

I was diagnosed at birth. When I was born, my skin came loose on part of my body during childbirth. There is no treatment for this disease. I use hydrating creams and water cures. I was also advised to take some Atarax when the itching is too strong, but I don’t personally take any. I take analgesics when it hurts too much. I also use the Skintifique Hydrating Gel since December 2014. And I have also started using the Skintifique Cleanser to cleanse my face. The gel is really very very hydrating.

What consequences did this disease have on your personal life? And your professional life?

I cannot work full time like everyone, because I get tired too fast. My body needs more recovery time, much more sleep. I sleep between 10 and 12 hours every night. I need a car with an automatic transmission, because when I got my driver’s licence, my feet were so damaged that I couldn’t push the pedals. And I need an apartment full of tailored items. For example, I cannot open a bottle of water on my own, so I have devices from shops for handicapped persons so that I can manage on my own at home.

What is the most difficult story that you had to face linked to your disease?

When I was told at school that I was handicapped, and that I would not be able to do the job that I wanted. I wanted to be a social worker. In the end, I succeeded 20 years later. But I failed my studies because of that. I was much less interested in school, and I quickly dropped out. I was 15. I discovered after that when I started working that there were trainings that existed which were adapted to handicapped persons, and that we could do long studies as long as they were adapted. It was possible.

What advice or tips linked to your illness would you give to someone suffering from epidermolysis bullosa?

Do not hesistate to consult with a naturopath or a dietician to adapt your diet. You need to take the time to moisturize your skin, even if it’s annoying. When your skin is very dry, you need to hydrate it 3 or 4 times a day. It is important.

And what would you advise against to a person affected with epidermolysis bullosa?

My advice is to avoid as much as possible supposedly antihistamine medicine, which acts more on your brain than anything else, and doesn’t help not to scratch yourself (like Atarax). It rots your brain. It helps to sleep, but personally, I don’t find that it helps not to scratch, and all the persons who have been taking it agree with me. Because the body gets used to all these treatments. We start taking them when we are babies, and it isn’t good for your body to take medicine all your life.

What advice would you give to find information and useful solutions?

There is the Debra association. They have a Facebook page, on which we can talk. Appart from that association, there isn’t much information on epidermolysis bullosa.

What did this illness change in your life?

Undoubtly, it made me stronger. I have a very strong character. I am often told that I am more of a fighter, more volunteer. For example, the fact that I was told that I couldn’t do the job that I wanted did not stop me from going back to school at 30, and from fighting for my diploma. And I got it. I don’t let go. If you had a message to send to persons affected by epidermolysis bullosa, what would it be? You need to see the positive sides as much as possible, be it with your illness, or life in general. Don’t think about the negative, even if it is part of your everyday life.

And what message do you have for those who don’t know anything about epidermolysis bullosa?

Go to the Debra association website if you want to learn more about the symptoms. Often, people who don’t know about this disease think that it is a simple skin condition like psoriasis or eczema, which isn’t invalidating or disabling. They don’t understand that someone with epidermolysis bullosa can be declared a handicapped person. They don’t know that we have problems swallowing, bad vision, that some days we cannot walk…