Our Stories

Gianna’s Story

My beautiful daughter:

It all started in 1995. At the age of five, Gianna’s urine showed protein and blood. We were told she had Minimal Change Disease and for the next six years I focused on Chinese medicine, alternative medicine and ace inhibitors. Gianna continued to spill +3 protein and I didn't want to play guessing games as to what drugs she should or shouldn’t take.

I read that different types of kidney diseases required different medications. I thought it was time to request a kidney biopsy.  After the first biopsy in 2001, we were told Gianna had IgA Nephropathy. This did not require prednisone, so we continued along with ace inhibitors.

Three more years passed and still +3 protein. So, we went for another opinion. Gianna is now 13 and the doctors suspect the worst. They recommend high doses of prednisone, only to find she is resistant. A second biopsy was preformed in 2004 to confirm our worst fears – it’s FSGS.

Two years later, at the age of 16, Gianna’s kidneys failed and she started dialysis.  Then, at the age of 18, she is blessed with a transplant. However, within a week the disease is back.

Today, Gianna is still battling this disease. She has taken rituximab, galactose and many other drugs. At 20 years of age, she attends college and refuses to allow FSGS to run or ruin her life as we all continue to fight this disease head on.

As her mother, I can only learn thru Gianna and keep my strength. We give to NephCure because they have been apart of my life for seven years, continue to guide me and help open new doors, which leads to new ideas and hopefully the answer to stop this disease.

I will forever be grateful for NephCure's passion, knowledge and dedication.

Thank you, Joanne (Gianna’s mother)

Donation in Honor of Gianna

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