20 years worth of dialysis, is it worth it? oh yes it is!
I was diagnosed with AHUS when I was 11months old and have been on dialysis, my entire life, except for when I received a transplant that only lasted 9 days in 1999, I was 11 years old. I'm now 21 years old, a full time veterinary technology student at Medaille College in Buffalo NY, I drive a car, I also work at a nursing home part time, but unfortunately still on dialysis. I am moving slowly but surely within the process to receive a new kidney transplant, it's taking a long while to get back onto the donor list, but all the while it's been worth it to be on dialysis this long, up until now, now that there is more and more information being brought to our attention about AHUS, it's amazing how things have been changing since I was diagnosed in 1989. If anyone has any questions at all about dialysis or about living with AHUS, whether your children can lead a normal life, I'm going to tell all of you, that yes, children with AHUS may have to rely on a machine, or for that matter on medicine to help them live, but they can adjust, they can live as normal lives as they possibly can, because AHUS doesn't have to take over a person's life. I have learned that even though I have this disease that could potentially kill me, dialysis could potentially kill me, I'm living my life as normal as possible; my doctors may not like the fact that I want to work with exotic animals (they can be the most dangerous) but that's what I want to do, and doctors can't really stop me, I've proven them wrong so many times. Does anyone have any questions for me?
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The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
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Did you know...
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
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