Introduction
Wishing everyone health and happiness...and looking forward to meeting you.
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Comment
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Comment by Jessica Olivia Frysz on August 15, 2009 at 2:36pm
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Grace,
I'm Jessie I was diagnosed with aHUS in the year 1989 I was 11months old. It's awesome that you are a research technician, that sounds fascinating! I'm currently heading into my 3rd year at Medaille College here in Buffalo NY as a veterinary technology student. I'm now 21 years old, and still on hemodialysis, I wasn't able to pursue PD after my severe case of Peritonitis, but I'm still trucking. I work part time as a dietary aide at a nursing home, near my house and I also drive a car. I know it sounds like a lot, but I enjoy having my independence despite having this disease, I don't let it get me down, I also take dance classes. I hope that you keep on fighting with your head up, because that's the way to do things.
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Comment by Heather Still on August 13, 2009 at 10:13pm -
Welcome Grace. I look forward to hearing more of your story. My sister is also on this site...Desiree Mayne. She was diagnosed as an adult post-partum at the age of 28. My son was diagnosed at 3 years old, now 10. My sister has been lucky enough to have a healthy kidney for about 4 years now, but I am sure she would love to hear from another adult that has gone through the same trials as she has. Take care.
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Comment by Colette Ann Frysz on August 12, 2009 at 12:52pm -
Hi Grace,
I'm glad to hear from a young woman who is doing something despite her disease. It is so encouraging when I hear stories like yours.
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Comment by Ruth Talbot on August 12, 2009 at 8:50am -
Hi there Grace - greeting from GA! Glad you found us.
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Comment by Linda Burke on August 12, 2009 at 7:43am -
Hello Grace!
Wecome to the newly launched interactive website of The Foundation for Children with Atypical HUS - I'll mention some interest areas on your Member Page so that you ckeck out resources of possible interest to you. We look forward to your participation and wish you all the best!
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Comment by Donna Kolp on August 11, 2009 at 11:37pm -
Welcome!
This is a great place to meet other people who have either been down this road as patients, or have a loved one who is fighting this disease. Alot of resourses that are very helpful!
Glad to have you!
Take care,
Donna Kolp
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
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.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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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.
more factoids...
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