Author Archives: nephceurope

I am a mother of 3 children of respectively 15, 11 and 9 years old.

My eldest, my son Niels, is suffering from a rare disease called Nephrotic Syndrome, which he got at the age of 2. He has a frequent relapsing complicated form of Nephrotic Syndrome. I have studied HND Economics & Linguistics. At this moment, I work as International Coordinator Registries for Organtransplantation at Eurotransplant in Leiden, the Netherlands...

My story began almost exactly 31 years ago when I was first diagnosed with Nephrotic Syndrome (MCD). My parents, concerned about the situation and the lack of information took me to the USA. Little information was added to my condition. So it was an unfair battle almost between me and my family against this disease at that time, because there was not enough information that exists nowadays.
During nearly 20 years I have taken very high doses of cortisone...

My name is Anders Nielsen.
I am 32 years old,live in Copenhagen in Denmark. I have always been very active with sport, and socially.
In 2008 I was diagnosed with FSGS, which is a auto-immune disease in which the immune system destroys the kidneys. I have been in a lot of different treatments. Nothing worked!
I have bad hearing which came in December 2007 and there are 2 documented patients with my diagnose who has bad hearing in the whole world. I am one of them.
In February 2008 I showed a ...

Hello everybody,

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...

Hello, my name is Wendy Cook. I am a mother of two children amongst which is David who is suffering from NS.

I am a trustee and chair of the ‘Nephrotic Syndrome Trust’ (Nest) based in the United Kingdom (www.nstrust.co.uk). Nest was launched in 2005, the charity aims to:

• Raise awareness of Nephrotic Syndrome
• Offer a website resource, and support to sufferers and their families who are affected by Nephrotic Syndrome
• Raise money to fund pioneering research.

I am also involved in a new global ini...