The Atypical HUS Foundation

I know this is a site for children with aHUS. I am an adult (29) but am looking for support and to learn what I can from anyone who has been through this devistating disease. aHUS took out both of my kidneys and I have been on dialysis since January. I have a 3 year old daughter, who has been my driving force to get better. By the grace of God I am still here with her. She turns 4 next week. Anyway, I look forward to meeting you and learning from you! God Bless!
JZ in Arkansas

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Comment by Grace on November 20, 2009 at 10:14pm
Hi Jill and welcome. Fortunately this website is very embracing as the aHUS experience can be so diverse. I was diagnosed with HUS at age 19, I'm 28 now, also on PD. If it's been less than a year for you(?) you still need time to process the trauma, or at least I did. Don't hesitate to ask me anything, or if you just want to talk, on or off line.
Do encourage your friend to join. The more the merrier! And I can't wait to see photos of your daughter if you feel like posting them!
Comment by Jill Ziegler on November 20, 2009 at 4:25pm
Thanks for her Birthday wishes!!!!
You and I have very similar stories....only you have been dealing with it ALOT longer. I was dx with aHUS at 28. I am 29 now. I have the H factor too. I am doing PD and it is working great right now. I do the night cycler for 8 hours. It has been very traumatic this year but God has seen me through it. aHUS has changed my life in so many ways. I have a greater appreciation for life. I am so glad you are on this site and willing to chat. I have another friend I hope will join this site. We got sick at the same time with aHUS. We didnt know each other until we were sick but have become friends through all of it.
God Bless
Comment by Jessica Olivia Frysz on November 20, 2009 at 2:47pm
Hi Jull,
I'm Jessica. I've been living with this disease since I was 11months old. I'm now 21 years old, and still on dialysis. Along with the aHUS I have Factor H deficiency. This site is indeed for children, but I was diagnosed at a very young age, and this site wasn't started until last year or so, so really, this site is for both patients and parents who are suffering from aHUS. Like you, aHUS took both of my kidneys, I had my kidneys removed at the age of 1, and was placed immediately onto dialysis, starting with PD. At 11 years old, I got a transplant, but because of the rareness and severity of aHUS, I ended up "rejecting" the kidney. But now, I am working to get back on the transplant list to get another transplant (after waiting 10 years-being off of the list). But, if you ever have any questions or concerns, please don't hesitate to ask. I know how it feels when you are looking for someone who has been through a similar situation, and it helps to get the feedback. Happy birthday to your daughter by the way!



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