As you may know, I was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) 5 years ago. FSGS is a disease that attacks the kidneys and causes scarring of the filters, resulting in kidney failure, dialysis and transplant. Currently there is no cure for FSGS. My doctor assumes that I have had FSGS my entire life but it wasn’t until I became pregnant that I was aware anything was wrong. It has since been an ongoing battle.

What is it like to have FSGS you might ask? That is a question I have tried not to focus on. I guess, I thought one day it would just go away but that is not what happens. It starts out slow and progressively gets worse. FSGS is a silent disease in that you really don’t feel bad. The side effects of the medication are where the struggle lies. It is really hard to take medication that makes you feel bad. That is my battle everyday. I am taking Cellcept to lower my immune system and I just made the transplant list.

I don’t want sympathy and I, as my Nana would say, I am as tough as a boot. What tears at my heart is hearing about the children that struggle with this disease. I know how I feel on the medication and I wish that feeling wasn’t a part of their lives. We have to find a cure. I have decided to participate in Nehpcure’s Letters for Life campaign in order to raise public awareness. FSGS is a silent disease and our government only funds research in which there is a need. We need to give this disease a voice.

NephCure is an organization made up of patients, their families and friends, researchers, physicians and other healthcare professionals who have joined forces to create awareness and generate funding for research. The NephCure Foundation is the only organization in the country whose sole mission is to find the cause and cure of Nephrotic Syndrome and FSGS.

How can you help? Make a gift to The Nephcure Foundation. Support stem cell research. Apply to become an organ donor or just spread the word. I also invite you to go to the "Get Involved" page (click here)on the Nephcure website for additional ways to help.

It only takes a few moments. A few moments of your time could change the lives of so many. On behalf of everyone struggling with FSGS and Nephrotic syndrome, I thank you for your time and support.

Jennifer Jacobson