Discovery
I suffer from Neurofibromatosis myself. They discovered it when I was two years old. The dermatologist told my mother. First it was just a word, but after she read more about it, she was terrified what could happen to people with this disease.
I used to have visible bumps, just like now. Children then ask me what it was in my neck. As a child I could explain to them that is has something to do with the nerves, but that it was not harmful. I also got Café-au-Lait spots
In the past I have often been in the hospital for console. They made an M.R.I.-scan of my vertebral column. On the photos they could see it was not good. They were surprised that I was walking. Due to the photos I would be in a wheelchair. The doctors advised me to be careful and don't shake my head to much.
I was able to lead a normal life: I went t a ordinary school, I was on football and badminton. As a child I learned to play the piano and later on keyboards. I also made music with the computer. I finished my High school and after that I went to the MLO.
It started with insensibility in my knee. After that I lost power in my right hand. As a result I was unable to do laboratory tests. I was also not able to play music anymore. They removed a fibroma high in the spinal. As a result some power came back. But something came by: meningitis. They put a drain
Further
I was then looking for another education, with the help of Social Work I found Hoensbroeck. It is a reintegration training for people with a handicap. I followed the training for Mechanical engineering draftsman. During that study I also passed my adapted drivers licence. I was able to drive again in an adapted car. Due to the training I found work and started to live on my own.
For a time all went well, until my health got worse again. I had to stop my job and was unable to drive a car at all. They tried an other operation, they placed something in my spinal to lower the pressure. With no result. I went to rehabilitation centre to be watched carefully. They tried Cyberknife
More information:
Cyberknife ‐ ErasmusMC. (Dutch)
www.cyberknife.com close
I went to a Fokus
By prolonged sitting or lying on one place, the skin may be in a fix. Therefore there can be no blood flow through the skin and damage it. There may be a gap opened up in the worst case, and surgery may be necessary. There is then a piece of extracted healthy skin tissue, for example, from the leg and introduced into the hole. This is done by the plastic surgeon. close
It is a tube in the trachea which allows long-term respiration. a hole is made below the vocal cords, so that the air goes almost directly into the lungs. The advantage over a mask, that you can eat and talk. When you are not on the respiration, then a speak-valve allows you to speak. Otherwise the air escapes from the hole before it reaches the vocal cords. close
Nowadays I live in a form of living with care, because I'm totally depended. The only thing I can do on my own is using the computer with a computer adjustment. This website is made that way. My future is a matter of patience and hope it wont get worse.
To end my story positively:
With good care around me and my computer, I'm coming through the days...