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Family Stories
The Alport Syndrome Foundation was founded by families affected by genetic kidney disease. Two of these families have been dealing with Alport Syndrome for several generations: Sharon’s Family and Vint’s Family. They wanted to share their experience with others dealing with Alport Syndrome in order to provide these families the support and connection they need. By sharing their stories, they hope to create a caring and strong community dedicated to the education, communication, treatment and cure for Alport Syndrome.
Every story counts – whether you are a person with the disease, a family member, friend, researcher, healthcare professional, advocate or volunteer. If you would like to share your story online you need to be a registered member of this site (see Register). Please contact info@alportsyndrome.org for information on posting your story.
| Sharon’s Story
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… |
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| Vint’s Story
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… |
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| Joy’s Story
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… |
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| Thomas’ Story
Hello, my name is Thomas Michael Chapman. 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… |
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| Sheena’s Story
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… |
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| Doug’s Story
My life living with Alport Syndrome(AS) spans over 50 years. My symptoms of kidney problems began when I was five years old… |
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| Erin’s Story
I am writing to share the story of my husband Steven Munichiello and his transplant story. My husband is 36 years old and has Alport’s Syndrome… |
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| Mick’s Story
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… |
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| Matt’s Story
He was a happy-go-lucky child himself, who, at a young age was diagnosed with Alport Syndrome – an inherited disease of the kidney… |
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| Dave’s Story
His story began when he was four. He started wearing a hearing aid when he was seven. It wasn’t until a health emergency in college that he knew he had Alport Syndrome. … |
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