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Joyce’s Story (Alport Syndrome)

Joyce's Story (Alport Syndrome) Hi my name is Joyce and I’m 33 years old. I was diagnosed with Alport syndrome when I was 21. My blood pressure was really high so I went in to have a check up. That’s when I found out I was at end stage renal failure. They put my fistula in and I started dialysis right away.

I was on dialysis for six years in and out of the hospital with numerous health problems. I ended up getting a transplant that lasted two and a half years. They had me on a high dose of prograf which is a rejection medication that killed that kidney. I have been back on dialysis again for a total all together of 10 years with no hope of another transplant.

My heart is not strong enough to handle the surgery again. I keep my head up for my family and live day to day. Someday’s are better than others but I’ve got my nieces and nephews that are here for me and my family so I am truly blessed.

Hang in there and live your life to the fullest. I now do and never take it for granted.

Joyce
Illinois
Submitted Janurary 25, 2014

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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