Charlene is 25 and suffers from non-Herlitz junctional epidermolysis bullosa. This is one of the forms of epidermolysis bullosa, a rare disease due to the absence of collagen and other molecules which are essential constituents of the skin and internal organs (for more information on the orphan disease, click here). Charlene has recently graduated from high school and is preparing to get into college.
Can you summarize your story with epidermolysis bullosa?
I was born with bubbles on my fingers and arms. The hospital didn’t have a neonatal department, and I was transferred to another hospital. I was hospitalized for approximately 10 days. The medical team didn’t know “what was wrong with me” and my parents learned that I was suffering from EB after one and a half month, thanks to the biopsy. I am the only case in my entire family.
Today, I have to take care of my skin every day, or every other day for the big treatments. This consists in piercing the bubbles, putting antibiotic cream if they are infected, wound care, and compresses.
I also use moisturizing creams. When I was younger, I tried a lot of creams, I tried all the new ones to see which ones worked. Now I use the Hydrating Gel Plus HS which was recommended to me by another person with EB, as well as a cream that was prescribed to me at the hospital. I use the Hydrating Gel on my body, mainly on my joints, thighs and back. It has helped me a lot. Since I have started using it, I find that my skin is much more supple, especially around my shoulders and main joints.
What consequences has epidermolysis bullosa had on your personal and professional life?
I will never be able to drive a car, because when I was a child I developed bubbles in my eyes, which has led me to have poor sight. The only solution would be a cornea transplantation, but it is not planned for now.
I have had a normal education up to 8th grade. Then I went to a health center, because I couldn’t manage everything between my frequent leaves of absence from class, the treatments, and the hospital stays…
Otherwise, I have a little trouble fitting into the professional world as I am partially-sighted. I would need an adapted workstation. Some days, I have trouble walking. There are many elements that need to be taken into account.
What is your most painful experience linked to epidermolysis bullosa?
The rejection by other people was the most difficult for me. Especially when I left school for a while. I lost my school friends one after the other. Creating social relationships is sometimes complicated.
And what is your most pleasant experience linked to epidermolysis bullosa?
Meeting people like me through the Debra association. Ever since I have met people suffering from the same disease as me, I have realized that some of them have a perfectly normal life, and are happy with their personal and professional lives. That motivates me a lot: I say to myself that these persons are not afraid of other people’s opinions. It helps me push my limits, and to go out despite my skin wounds. Because if you wait till your wounds are all gone, you never go out.
What advice linked to epidermolysis bullosa would you give to someone suffering from the same disease?
Sometimes, it is a good idea to speak with someone outside your family. My mother almost lost me when she was pregnant. As a result, she protected me a lot, and I didn’t dare tell her some of the things that made me suffer, because I didn’t want her to worry any more. It is when I met people suffering from epidermolysis bullosa and medical professionals, that I was able to talk about it, and to let go of all this.
It is important not to stay in one’s “bubble”. It is particularly important to not limit oneself just because you are afraid of suffering afterwards.
What sources of information would you recommend to people suffering from epidermolysis bullosa?
Of course, the Debra association. They also have a Facebook page. You should at least go there once: you can meet professors, families, nurses… They can give you advice, and direct you towards a hospital with a team which is trained for epidermolysis bullosa. In addition to that, we have a lot of fun.
What do you think that epidermolysis bullosa changed in your life?
I am maybe more reckless that I would have been if I hadn’t had epidermolysis bullosa. I am a fighter: I always follow through with what I undertake. Maybe if I didn’t suffer from EB, I would not be so persistent and I would let things go more easily.
If you had a message to give to other persons suffering from epidermolysis bullosa, what would it be?
Don’t stay alone. Even if you need to avoid some activities, you can laugh, have fun and thrive like everyone else.
If you had a message to give to people who don’t know anything about epidermolysis bullosa, what would it be?
It is better to ask questions, to seek information, rather than to make fun or to reject someone because of their skin or because they look different.
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