My Nonprofit Reviews

I love the Castleman Disease Collaborative Network (CDCN).

First of all, the co-founder, David C. Fajgenbaum, has ICMD. Then he really understand the issues, the gravity of the situation. This doctor and his team are intrinsically and dedicatedly driven to find a cure for Castleman disease patients and to help to save their life all around the world..


He did it to me, in Canada.

I received the CDCN contact from an on-call hematologist in the emergency room when he knew I had Castleman disease. I kept it to share it during my future appointment with my hematologic oncologist.

But I haven't had time to talk to my hemato-oncologist before the relapse.

I relapse during summer 2021. I was on the first-line treatment (Siltuximab). My condition was in freefalling and hematologic oncologist arrived to his limit.

My lungs were attacked and my liver was failing.
A nurse prepared me for the possibility of a transplant. I was not ready to deal with it and I ask the doctor to call the CDCN.

He wrote a mail to Dr Fajgenbaum, which ask some results from labs. Then, Dr David proposed a treatment more appropriate to my needs and physiological characteristics. My treatment was quickly modified under his advice. Since then, I have been and still am in remission.

Secondly, the CDCN brings us together once every three months. These web meetings keep us informed of research progress. We can also ask questions and we have precise answers. They also create a support network for us.

Thank you for everything you do to help us stay alive and have a more normal life.