Macy's Struggle with FSGS

Macy has FSGS a debilitating kidney disease. She has gone from a healthy little girl to End Stage Kidney Disease in less than 2 years. She is currently relying on dialysis to sustain her life. There is no cure for FSGS. Please partner with us & the Nephcure Foundation to find a cause and a cure to this terrible disease.

Category:

People & Blogs

Tags:

• fsgs
• nephrotic
• syndrome
• kidney
• Macy
• dialysis
• transplant
• OneTrueMedia

[sheena1625]

god bless her ,

\

[TheWillibob123]

sorry but i also have fsgs and there are lots of treatments available and it iis curable

[MsMalai08]

Macy you are very strong. I can't imaging going through this disease at the age of 2. I felt what I went through in my 30's with fsgs I had lost hope. By the grace of God I thought differently about fsgs. Macy you are a remarkable young lady. Stay strong. Peace be with you.

[MsMalai08]

Hello My name is Shauna, I too was diagnosed with fsgs 3yrs ago. I remember the pain I endured due to the swelling in my leg and ankles. My legs were so full of fluid to the point my skin was so tight. I was so afraid to scratch my legs for fear of cutting my skin open. Every morning I would wake up with a swollen face. It was horrible. I had 40lbs of water weight. To make matters worse my insurance droppped me. I was dealing with a lot. I am under a Dr's care now. God Bless you Macy.

[alexraverbabyss]

hi my name is alex i live in the uk and i am 16. i have fsgs and at the moment i am on hemodialysis 3 times a week. I got nephrotic syndrome when i was age 6. at the age of 10 i became steroid  resistant and this point i had a biopsy which comfirmed i had Nephrotic syndrome FSGS. from age 10 to 15 my kidney were starting to fail and last year i started hemodialysis. i am on the transplant list and its just a waiting game.

[renalpenguin]

I'm almost 20 years old and also have FSGS. I was diagnosed four years ago. I was losing 23 grams of protein a day and fought the disease with prednisone, cyclosporine, and CellCept. I started PD on March 8 2010 and got a kidney from my cousin on June 22 2010. I am on caringbridge- my site is hannahreimers. Love you Macy! Praying for a cure!

[jtskate23]

poor thing she's such a strong little girl i wish the best for your family and little macy i hope she continues to fight and make it through it.

[tcoop76]

My daughter has suffered from NS/FSGS since 15 months. She is now 11 and has received two kidney transplants. The FSGS has re-occurred in both incidents. I know what you are going through. I've seen the faces, the looks, gone through the hospitalizations, etc. If you ever would like to chat, please send me a message. We all need to help NephCure find a CURE for this horrible disease. God bless Macy, Eryn (my daughter) and all suffering from this horrible disease. -Tara

[jblz4288]

i also have fsgs and my kidney have shut down.. i wish i could meet you guys and talk about finding a cure

[alliwaugh]

My sister-in-law, Alisan, shared your link. Heartfelt prayers and thoughts for little Macy and your family. We must find a cure for this debilitating disease!