The Atypical HUS Foundation

April 2012 Blog Posts (4)

Bye Bye Stomi

Finally a chapter has closed in my life. I no longer have my colostomy and I truly miss it. Although it was a long process due to infection inside the incision luckily it wasn't as bad as the sergeants thought it would be. On March 26 my life came back to be what I've been wishing for , for approximately 6 months and i'm beyond glad God has gavin me the chance to see myself progress. It doesn't matter if i'm an a-typical HUS patient cause nobody said life would be easy , so as a normal…


Added by Ivette Rios on April 20, 2012 at 8:52pm — 3 Comments

Update on BK

Well, Nathan did respond to the dose of Cypro, however, his creatnine jumped again so it's time to biopsy the kidney.  Everything else looks good, (I got that oh oh feeling when his blood pressure sky rocketed earlier this week).   The thinking is the BK is in the kidney or because we've lowered the anti-rejection meds so much in response to the virus that he has a little rejection.  There is also the added interesting tid-bit that the kidney does not like prograf to begin with.  It also…


Added by Cheryl Biermann on April 17, 2012 at 9:13pm — 1 Comment

Nuerology Update, BK Virus, ect.

Today we had our much anticipated visit with neurology.  There were some indications via medical sources  that neuroloical conditions could improve after transplant and/or Soliris. 


Chorea was still evident but was called mild.  Medication could be given for it, but he'd been on it before, (Depakote), and it caused his blood levels to plummet so we are not going down that road.


In a year, provided there are no seizures, he will be given another EEG, if it is…


Added by Cheryl Biermann on April 9, 2012 at 4:28pm — 2 Comments

Update on Anna Finley and questions

It is been crazzy here seems one thing after another. She had her ear surgery in December, then in January she started having back pains and blood and proteine in her urine. Then in February she had stomuch paint to the point she totally stoped eating doctors  diagnosed her with Lactose intolarance, telling me she cant have any dairy product and putting her on 3 different medications for it. I looked up on internet about Lactose intolarance and finding out Anna never had any of the simptoms…


Added by Svetlana Finley on April 4, 2012 at 5:17pm — 4 Comments

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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.

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!
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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.
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 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

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

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