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
Jill
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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WELCOME - JOIN US!

The Atypical HUS Foundation 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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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