Family Stories

I was born with Alport syndrome. It runs on my mother’s side of the family. They knew when I was born that I most likely had the disease. I have two older brothers and they also have Alport syndrome and my mother is a carrier. As far as cousins and other family members, none have it that we are aware of.

My story starts when I was young, too young to really remember.  My mom says I was still wearing diapers, so I was only a year or two. She noticed the color of my urine was dark.  I went through all kinds of tests.

When I was a senior in high school I started to become sick. I had just lost my father a few years prior and our family had barely started the process of trying to recover from that. I was just a rebellious kid who was terrified knowing that something wasn't right with my body.

I am writing to share the story of my husband Steven and his transplant story. My husband is 36 years old and has Alport’s Syndrome. His family doesn’t seem to have it quite as bad as others we’ve known, with obvious hearing or vision loss. He has kept good track of his health and was seen regularly by a nephrologist.

The first time I heard about Alport syndrome was in the second grade when our family doctor told my parents I had the disease. Maybe being diagnosed with it early before I even understood anything about it was a blessing, since I really did not worry much about it.

Five-year-old Jax crawls upon the floor, playing with Legos. His father, Matt, watched with contentment, visiting the place of where he grew up. “It’s good to be back in Marshalltown when I’m healthy,” the father said. “This is my first trip back since all this happened.”

My transplant was so long ago, it seems like I have always had it. In fact, I have had it for thirty-two years now (2/11). When I was six, it was discovered that I had Alport‘s. There was major concern because two uncles and two cousins had recently died from it. That was 1949, and since there was very little known about the prognosis or even less about treatment, I was directed to stay in bed and rest. After a year of becoming both flabby and morose, my parents wisely decided to allow me to live a normal life for whatever time I had left.

My life living with Alport syndrome (AS) spans over 50 years.   My symptoms of kidney problems began when I was five years old.   I was diagnosed with AS at age 7 in Houston, Texas after two years of testing and what I would characterize as well intended shoot-from-the-hip experimentation to discover what was causing my frequent urination.

Being a good patient means many things. Perhaps most important is learning as much as you can about Alport syndrome, getting the right information and maintaining a positive attitude. You can live a good life with a kidney disease.

John was diagnosed with Alport syndrome when he was a baby. As is typical with many families affected by Alport syndrome, John is not the only family member with the disease. Four other family members had received kidney transplants as a result of an Alport diagnosis.
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