
Growing up with Gaucher I already had problems with Gaucher disease on my fourth birthday. I could no longer walk, I got a swollen stomach and was very sick. At the hospital they initially thought I had leukemia. But fortunately there was a professor there that knew the disease. They then took out my spleen. I still recall that I found it really horrible in the hospital. I never wanted to go back. I only went to primary school for half days since I got tired so quickly. Sometimes I had problems with bone inflammations. I then had a lot of pain and a fever. I was read to day and night to have a little distraction from the pain. At the time no treatment yet existed. We had a doctor who was so nice as to visit three times a day so that I did not have to go to the hospital. And every time that he thought I would really have to be admitted after all, things got better. Then I had to learn to walk again. They had told by mother that it was expected that I would not live beyond the age of 14 or so. She only told me about this much later. Since I could only go to school for half days, I could not go to a normal secondary school. So I pursued my education at a school for children with a medical problem. In my puberty, I did not have much further problem with Gaucher disease. The disease was certainly there, slumbering under the surface, but I was a reasonably carefree adolescent. I finally completed my secondary education at a normal school.

Growing up with Gaucher

I already had problems with Gaucher disease on my fourth birthday. I could no longer walk, I got a swollen stomach and was very sick. At the hospital they initially thought I had leukemia. But fortunately there was a professor there that knew the disease. They then took out my spleen. I still recall that I found it really horrible in the hospital. I never wanted to go back.

I only went to primary school for half days since I got tired so quickly. Sometimes I had problems with bone inflammations. I then had a lot of pain and a fever. I was read to day and night to have a little distraction from the pain. At the time no treatment yet existed. We had a doctor who was so nice as to visit three times a day so that I did not have to go to the hospital. And every time that he thought I would really have to be admitted after all, things got better. Then I had to learn to walk again.

They had told by mother that it was expected that I would not live beyond the age of 14 or so. She only told me about this much later.

Since I could only go to school for half days, I could not go to a normal secondary school. So I pursued my education at a school for children with a medical problem. In my puberty, I did not have much further problem with Gaucher disease. The disease was certainly there, slumbering under the surface, but I was a reasonably carefree adolescent. I finally completed my secondary education at a normal school.