Hello. I received your message. My children are diagnosed with aHUS. At the moment one of them has a relapse. He is using Solaris now. He is the first child to use it in HK. He seems to have some side effects like vomiting, diarrhea and stomachache. Is that normal? I am glad I found this so that I can know more.
Welcome to our group! I'm an adult 35 yrs old who has been dealing with Ahus since I was 28. I was on dialysis for 3 years. Hemo and peritoneal. I've had a kidney transplant and now an on soliris. I'm an open book so you can ask me anything. Please feel free to chat, call me or email me. I'm also on fb so many ways To communicate
Sending you well wishes
Hi everyone. I sent a msg to Linda saying thank you, and for your warm welcome thank you everyone. I am still wondering how to cope with the diagnosis -- mutation of the C3 gene, acute episode in December for which I was hospitalized under difficult circumstances here in China -- and feel I have not adjusted -- that may take some time. I have 2 kids and work full time and in fact tried to do a work event today after being off work since Dec. 10 and found it very, very tiring. Is this normal? I'm wondering how I can possibly get back to "normal" life. Did any of you have this experience? (I'm guessing the answer may be yes?)
Also -- the oddest thing -- I've been on eculizumab for 2 months and that should now be over for now (but who knows.) But recently I've noticed that my joints ache all over. It's almost like fibromyalgia, from what I've read. Does anyone know about this?
Oh dear. It's a lot to cope with, isn't it? I hope everyone is well.
If you ever have any questions or need to talk, leave me a message. I am 31 years old and having been living with aHUS for about 3 years now. At times it can be quite overwhelming raising my 3 year old daughter while working full time, but I am lucky to be able to live a pretty normal life.
Hope all is well, and once again, welcome to the community :)
Welcome! I'm also an adult patient. I was diagnosed 14 years ago and am currently on peritoneal dialysis and working full time. There are many great resources here, especially the friendly people! Please let me know if I can be of any help.
Welcome, we hope this site provides you with information and support. As a recently diagnosed adult with aHUS, you may wish to check out the tab 'Adults with aHUS' to connect with other adults. The physician and aHUS researchers who presented at the University of Iowa's 2014 aHUS Family Conference are now online (see the tab 'aHUS Materials & Info')
We look forward to your participation here, and welcome you to add a Home Page blog to share your story.
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Membership is open to patients, family, friends, caregivers research and medical personnel.
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.
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.
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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.
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? Contactinfo@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 email@example.com