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  The Cain Foundation Forum  Discussion Topi...  Personal Storie...  Posted on behalf of Connie. Her story.
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New Post 2/8/2013 1:20 PM
  Harrison09
24 posts
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Posted on behalf of Connie. Her story. 

 Hello, My name is Connie, we have two generations in my family who have BOR. My mother never knew what was wrong with me when I was born 37 years ago and at the age of five had to have a double uter transplant and at age 25 had to have my right kidney removed because of complications from on going infections. I am also partially deaf in both ears and use hearing aides. We knew nothing about BOR until my daughter at the age of 6 started losing her hearing, we thought it was just hereditary as my mom and her mom and I all had hearing loss. Lucky for us my mother in law worked for a audiologist and she suggested we have genetic testing done on my daughter to see why she was losing her hearing. My daughter is 16 and will be getting her first hearing aide this summer, I am blessed she has no issues with her kidneys or anything else. She does have the small skin tags on her ears that look like little holes. We are sure this effects more then just my daughter and I, as my mom is almost deaf and has the tags and my mom has a few siblings that are the same but I am the only one born with kidney issues. We were told by doctors that the BOR is also what associated my asthma and it is common for some people to have issues with respiratory. I am interested in learning more about this, as I had no idea of the rarity of it. Connie

-- 
Connie D. Hilbmann
"Life's a dance lets take one step at a time"

 
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