My name is Bart Hoogervorst and I am 25 years old. I have nephrotic syndrome (FSGS). I have this rare disease, since I was 2. That’s now 24 years (I’ am almost 26). I have had several recidivisms, the last one was in october 2008.
When I was 16, I had my last biopsy, before that I had MC. Because of the biopsy they found out that it was FSGS.
I have medicines to stay stable. I have cyclosporine and I also have an ACE inhibitor. The cyclosporine I have had for 13 years now.
I’ am studying international hospitality management at the Hotelschool in the Hague.
At the moment I do not have a job. Although I am working as a volunteer.
I have different hobbies/interests. One of them is to watch sport, on the TV. Especially soccer, tennis, cycling and ice speed skating (I am Dutch). At the moment I am not practising any sports myself. I also love to have a drink and a bite with friends. Especially wine is one of our favorite drinks. I also love to read a book, and I am interested in politics. Cooking is also one of my hobbies.
Since 2007 I am working as a volunteer by the Dutch kidney patient-organization. I am in two committees; Board for Nephrotic Syndrome and Young Adults. With the Young Adults I am the financial manager. Within the Dutch Board of Nephrotic Syndrome, I do international work. Because of this work I came in contact with the NephcEurope initiative. I support this initiative. I think it’s great that different countries are working together to find a cure for Nephrotic Syndrome. I am positive that in the future, because of all this hard work, we will find a cure!
If you have any questions for me. Don’t hesitate to contact me.
All the best,