Pascal, 18: courage in spite of (t) disability epidermolysis bullosa sounds like the name of a Finnish black metal band, but a disease. Sufferers are known as so-called "butterfly children". Unlike a cold, this illness is not just back after a few days of bed rest away, no - quite the contrary even, the prognosis for affected patients, according to the experts at the current time is extremely low. On the Internet I during the Winter Games Vancouver noticed a young man who suffers from epidermolysis bullosa. Pascal is 18 years old, made in Dresden and in terms of social media is an absolute professional: Facebook, Internet, Twitter
iPad, ... everything at the start. He has agreed to answer me some questions about his life with a very rare disease.
epidermolysis bullosa anyone can look at Google, you're affected. Describe in your words but what lies behind this komplizert technical term?
Pascal: Epidermolysis Bullosan (EB) is Latin and means "actually" skin replacement with bubbles ". So it is. I get very quickly due to pressure or friction on the skin blisters. This can happen all over. Even internally, the mucous membranes are affected. That is why I have problems with eating and can only assume most of finely pureed food to me. The bubbles have to be opened regularly. Mostly it results in an open wound. Until that is healed, it takes a long time. Also located at EB. Because the wounds I have to take (almost) the whole body associations. If healing the wounds then causes scars. Why are my hands also grown together and I can only move your thumb (or less) free. The same goes for the feet.
And why butterfly children?
Because our skin as thin as that of butterflies.
How about it because with everyday things for you with this handicap, for example, now that conversation where you have a lot of typing. Prepares you the trouble?
Pascal: I will asked again and again. "How do you manage to type so fast?" or so. Right now I'm on the iPad. Which to me makes my life very much. I'm glad I have it. By Touch technology, I can draw as what I like to do. Otherwise, I have a MacBook. Where I have my own technique for typing, where all are amazed. That is why all this is really a problem for me.
What then are the concrete things that you work hard everyday, I think washing or dressing intended rather tedious?
Pascal: It actually begins early, after getting up with the way to the bathroom, falling hard for me. But I want as long as there is still attempting these routes that I can to run. Then it continues with breakfast. As I said, I can not eat everything and be careful because of my neck and chew thoroughly. Which is very tiring and annoying. How I would love even a bun or something for breakfast. Also very stressful - not only for me but also for Mom - the dressing. This is usually associated with pain and takes too much time. Things such as washing, etc. do not go. So I mean showers. Because of the associations. I'm always so ne Art laundering and cats from time to time in the tub.
You wrote that you "so long as it is still" complete lines like. How then are the prospects for you and your illness?
was born when I felt the doctors in eight years, there was something about EB, with 8 years they thought then ten and so it goes further - to this day. EB can be cured never before with me, because it is a genetic defect. If, then for future generations. But back to "as long as it is still" a result that I can not do much and got I am very weak muscles. The very hindered. And of course there is no better. When I look back it's gotten worse from year to year. The median age is 30 years in EB patients. That's why I really want (as long as it is still possible and I can) what to do and have fun.
before even the food you have mentioned. Mashed. Well, I imagine at some time in the long run that's boring. How do you handle it? Begrudge you at times you feel something delicious?
Pascal: Mashed eat is not to say that it is delicious. My mom is an excellent cook, I think. From this perspective one can puree everything. So I can always eat what I want now. Containing only that it is very fine as porridge. Of course, I also often feel like pizza or something from McDonalds. Then, holding a pizza purchase, where I only eat it 2-3 Sueck. More is not easy. Quite often the taste enough already and I'm satisfied.
Okay. Would you describe yourself as 'disabled', ie those handicapped by your illness?
Pascal: Yes and No! A good friend once said "It's not hinder, but it is hindered," but there are so many things I can not. I regret to feel every day. Because I feel that I have just been disabled. But I for one, am very open on the road network. What many find surprising that I am so open to questions. But I like to keep. I want to educate and show that I'm actually cool and "disability" does not equal stupid in the head means.
This all sounds like a lot of restrictions. What things the "normal" life do you miss most? Sports, girlfriend, concerts, Job? Or in other words, how you spend your time?
The job is for me a very sensitive issue. I had broken my school to perform a job opportunity. But the future leaders had then taken over and were pretty naive. After a month of fun was sadly over. My last attempt to start a job has not worked. Although I could work at home. But it was so much stress, alone, only the preliminaries, I'm mentally not stand and had to abort. Which is a pity, too.
the moment I miss the most a girlfriend. It is very hard for me to know a woman learn, because I do not just in the disco or so. I actually go to concerts often. I just need a companion and a place for disabled people. If there is none, take care of myself, is that one organized. I prefer to be my favorite bands do sometimes live. I am a big hockey fan hockey and wrestling, I would want myself to play. Unfortunately this is only on the Playstation 3 One of my dreams, it is once again live at Wrestlemania this to be the biggest wrestling event of the year. But that's always so far away and too expensive with little flight in the U.S. and all the trimmings. Events here in Germany is also, these are Revange fights, after the main event in the U.S.. So a here in Germany I have ever visited. It was really great and I would love to do again. But I do not begrudge always the live concerts in the middle of the night sky!
Well, there are seemingly in Europe only about 30,000 people with this disease. Do you have contact with other Concerned? Doctors are also special or self-help groups, etc?
Pascal: Yes there is. The IEB
eV Debra . The organized an annual members meeting and there I meet also affected people. Unfortunately, I see only this one weekend, since we live all over Germany and it is therefore difficult to meet one another. Among the doctors: Yes there is. And although in Freiburg. But I know none of those. I have my doctors here in Dresden, I trust. I will not like new doctors ran at me, as most do not know exactly what I need.
Mitglidertreffen, doctors in Freiburg, wrestling in the U.S. ... how mobile are you? Pascal: Very unmobil. To the bathroom and back alone. All further away - that is, outside of the house - for me is only accessible with help. Someone would have to push me in a wheelchair or Mom has to drive me in the car.
It sounds to me after all a lot of restrictions. You are just 18 years old, in his prime. How do you cope with the fact that you have this disease? Is there some days when you just do not want more to have everything?
Sometimes? Always! I have (although I am not as notes), depression and certain anxiety. I had also tried it with a therapy, but that is all nonsense. Actually, I have everything I want. A wonderful mom who does everything and does, so I feel good, plus a lot of technical stuff. But I make it sometimes difficult to see the good things in life.
I would so like to have a friend with whom I could do something. I would like to take time to Paris, London and Vienna. But all these wishes are for me to achieve very difficult because it's a physical effort for me. Or the aforementioned Wrestling desire. There is also the desire to be able to work. Or I would have liked for mom and me a house where we could live in peace and without stress. There should not disturb us.
But these are all needs that will probably never meet. Without work no money, no money no house, etc. But you can with the work just not when I am mentally and physically so corrupt power. Since my health is more important to me. Yes ... and then when I see makes me sad we depresses me.
Thanks for the honest interview, Pascal. The last words of this interview are you again. Please do!
Yes, well, if someone has to give away a house or an iMac ... No, no, just kidding. I am grateful that I could do this interview with you. Maybe I've woken up some people's interest in the disease EB. Maybe someone wants to use even for what I would be delighted, because EB is actually very unknown yes. And if there is anything to discuss with EB or to me, then one should also like to contact me!
All right, thank you again Pascal and all the best for the future!
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