Well, when I was at Barnes initially, they sent my blood work off to Iowa for some genetics testing. Although most HUS is caused by E coli and in children, a very small percentage of people with HUS are adults who have a gene. They test for three genes that have a mutation. The H factor, I factor or MCP gene.
Initially I received the results of my genetic testing and all 3 of my gene tests came back normal. When we began the transplant process I had to have the 3 genes retested to make sure for certain I did not have the gene. This time the results were not in my favor. I had the Factor H gene. So now I have a rare blood disorder that caused kidney failure and I also carried the gene for it. I was pretty devastated because I was so confident I would not have the gene. But I have come to terms with the gene. Apparently I had it the first 28 years of my life, the question that still lingers in my head is, what caused it to become active at age 28? So many theories.
Linda Burke left a comment for Jeff Wilhelm
2 months ago