Family Stories

My story began when I was four years old. The doctors at the Naval Hospital in South Carolina diagnosed me with Alport syndrome. My mother didn't believe them and chose not to seek treatment for me. I'd always had blood in my urine but the doctors that saw me didn't know

Hello, my name is Thomas.   I am writing because I have Alports Syndrome. First off, the reason why I am writing is to provide hope for those who have been living with Alports and for those who just found out that they have Alports.   Before I go any further, always trust in your GOD. The story begins in 1984. I was a first grader at Concord Elementary.

I‘ve grown up with Alport syndrome (hereafter referred to as AS) all my life. I should clarify that. Growing up I knew that there was some kidney thing in the family that my grandfather had died from but I didn‘t know a lot about it.

My brother, Paul, and I were diagnosed with Familial Nephritis or Hematuria when we were around 4 years old. For me, this meant regular doctor‘s visits where they monitored my bodily fluids for protein and creatinine.

When I was a little girl, going to the pediatrician always meant peeing in a cup and a pack of M&Ms when we had to get shots. I remember one visit very clearly when I was about 5, putting my pee up in the window next to all the other cups. It had my name in black letters written across the outside and it looked different than all the other cups.
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