Forum Discussions (41)
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aHUS Business Cards and HandoutBusiness CardsAttached is a template for aHUS Calling Cards (Business Cards) that can be used to help guide others to the Atypical HUS webs… Started by Jodi Kayler in UncategorizedLatest Reply |
Current researchHello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud… Started by Joy Lewis in UncategorizedLatest Reply |
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SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda Burke in Soliris |
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Aug 25 Reply by Linda Burke |
Transplant Considerations: Things to think about when choosing a transplant centerHi all,I know several of you have transplants on the mind or on your child's horizon. Here are some things to think about when choosing whe… Started by Joy Lewis in Uncategorized |
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Aug 25 Reply by Cheryl Biermann |
Current researchHello all, I'd like to create a place where current research articles can be posted and sorted by topic. If you encounter a published stud… Started by Joy Lewis in Uncategorized |
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Aug 24 Reply by Kamal D Shah |
TreatmentHi, We are in the military. Hence, moving every 2-3 years. It's time for orders again. Wondering if anyone has any thoughts on Johns Hop… Started by KaTrina Slaughter in Soliris |
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Aug 13 Reply by Cheryl Biermann |
PrayersWas thinking that we needed a place to put special requests for prayer for our little ones, ourselves, our outlooks, etc. I know for me pe… Started by Christy in Uncategorized |
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Aug 11 Reply by Cheryl Biermann |
DialysisHi there - started this forum on dialysis - for now will include both PD and Hemo. Our son Hyde will be 3 in July of this year and he's cur… Started by Phyllis Ann Talbot in Uncategorized |
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Aug 8 Reply by Linda Burke |
low blood preasureHi members: During three years my little son have had a high blood preasure controled with minoxidil, trandate, captopril and adalar reta… Started by maria vicenta carratala rios in Soliris |
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Jul 2 Reply by Deborah Deffenbaugh |
heart controltomorrow morning when my son finish the hemodyalisis in the hospital, he has a control of a heart, he goes four times in a year, when we we… Started by maria vicenta carratala rios in Soliris |
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Jun 26 Reply by Cheryl Biermann |
Soliris or kidney/liver transplantPlease, please please help me guys. I am so confused. I have been told so many pro's and con's for the dual transplant and the same for Sol… Started by Stacey in Uncategorized |
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Jun 16 Reply by Linda Burke |
SeizuresI've seen a few people mention seizures as part of Atypical HUS. We are watching Nathan closely since he has had seizures due to fevers and… Started by Cheryl Biermann in Uncategorized |
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Jun 15 Reply by Linda Burke |
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 "About aHUS" tab 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 2010 genetic testing and treatment.
Did you know...
• • • • • • • • • • • •
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...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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