My name is Alf Dunstan Pedersen and I am 34 years old. When I was a kid I had frequently nosebleeds, but other than that, my physical health was good.
When I was a teenager I started doing mountain biking, and when I was 18 I exercised 5 times a week and raced at local competitions. Unfortunately, I had a fracture in my back when I was 17, but it didn’t stop me. When I was 20 I started to feel fatigued for no special reason.
After a while I got pain in my abdomen, and my dr. sent me to the hospital for a check. At this time, I couldn’t do mountain biking anymore, I was too fatigued to even walk up stairs! After 3 months doing tests on the hospital I got diagnosed with Gaucher Disease. The dr. told me there was a medication, but it was too expensive (!) so I had to do without!
My health got worse and worse, I weighed only 52 kilograms and couldn’t eat much. My liver and spleen was enlarged. After almost 2 years, I finally pushed “the system” so that I could start taking Cerezyme. I was 23 at the time. I got the meds, but not the right dosage, and the dr. didn’t take the necessary tests to monitor the disease.
In Norway, we have to take the infusions ourselves, at home. The hospitals won`t help us because of, again, money issues. So my fiancè is helping me taking the infusion at home. Before I met her I did it myself.
I am 34 now, and over these years I have never got the right amount of Cerezyme and dr`s here in Norway know nothing of Gauchers. I still struggle to get the needed treatment. I am still very fatigued, so I can`t have a job, and not very much social life. I miss the times where I could exercise on my mountain bike and be like other “normal” people.
-Alf Dunstan Pedersen; Kristiansand, Norway