Alexia is a young woman suffering from epidermolysis bullosa, a rare disease which strongly affects the skin as well as internal organs (click here to learn more). 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. She is an example, a model of curiosity and of spirit of initiative, and we wanted to interview her so that those who don’t know about epidermolysis bullosa could discover certain aspects through this testimonial, and those who suffer from it could maybe 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.
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 am forced to drive an automatic transmission car, because when I got my driver’s licence, my feet were so damaged that I couldn’t push the pedals. And I need an appartment full of adapted objects. 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.
On the contrary, what would you advise against to a person affected by epidermolysis bullosa?
My advice is to avoid as much as possible supposedly antihistamine medecine, 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 a person suffering from epidermolysis bullosa to find information and useful solutions?
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 on the Debra association website if you want to know 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…
Skintifique is a young science-based dermatology and skincare company which offers exceptionally safe and efficient products. For people suffering from severe health conditions who want to use our products in an intensive way, Skintifique offers access programs at privileged conditions, directly or in partnership with associations. If you feel you may benefit from such programs, don’t hesitate to check if a partnership already exists between your association and Skintifique by clicking here or to contact us directly at [email protected].