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.

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.

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.

When I moved to Seattle, Washington, I was absolutely floored that I nailed an interview at a law firm as their office manager. My previous job had been as a manager at Petsmart so this new position was a great gig for somebody 25 years of age. My experience at the law firm was very

Alport‘s is relatively new to myself and my family. My story began when I was 6 months old. My parents had me routinely tested and it was discovered that I had blood in my urine. I went through 3+ years of seeing urologists, nephrologists, etc., at CHOC, but they said that all of the

My name is Kevin. I'm 28-years-old and live in Nesconset, New York. Up until July 2012, I had no outstanding medical issues and had never been to a hospital except to visit others...not so much as one broken bone, or one chipped tooth. Luck of the Irish I guess. Everything
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