The Atypical HUS Foundation


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courtesy of Bill Biermann

There is no cure for HUS. In fact, there is no standard treatment, as each case is different. Children with typical HUS are in a life threatening situation, but if they survive the intial stages of the disease, they usually respond good to the supportive treatment.

The symptoms are analyzed and a treatment plan is developed. Neprhrologist have tried drugs that interfere with clotting, drugs that interfere with platelet function, blood transfusions, Plasma infusions (plasma is the liquid part of the blood),plasmapheresis (a blood filtering process). The best therapy is to closely monitor the disease, and provide supportive techniques to control blood pressure and minimized the damage to kidneys thru plasma and blood tranfusions. Early dialysis may be life saving until the kidney function is able to return to normal. Recurring cases must be watched very closely, and immediate treatment should begin to prevent another full blown HUS episode.

What combination of drugs and treatments show promise in atypical HUS?

  • Antiplatelet agents act by inhibition of platelet aggregation and thrombus formation. These agents shorten the duration of thrombocytopenia but are not beneficial alone; they are used in combination with plasma exchange.
  • Plasma infusion (fresh frozen plasma [FFP]) is effective in select patients. Plasma infusion supplements deficient plasma factors, with an overall response of 60%. Most patients require a large volume of plasma, which creates the possibility of circulatory overload. Dialysis may be required.
  • Plasma exchange is the treatment of choice in TTP, with an overall response of 80%. This procedure removes insulting agents and supplements deficient plasma factors.

Malvinder S Parmar, MD, FRCPC, FACP, Medical Director, Medical Program, Timmins & District Hospital, Assistant Professor (VPT), Faculty of Medicine, University of Ottawa, Department of Internal Medicine.

Treatments with plasma
Plasma, the liquid portion of the blood, has been quite successful in alleviating many of the symptoms involved in Atypical HUS. A plasma transfusion is similar to any blood transfusion, as the patient is administered plasma over a period of 3 - 4 hours. Plasma contains thousands of different proteins. One of these proteins, factor H, is believed to be the source of the problem for a fairly large group of Atypical HUS patients.

Treatment with Plasmapheresis – MD Website
Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.

What's involved in a plasmapheresis treatment?
A plasmapheresis treatment takes several hours and can be done on an outpatient basis. It can be uncomfortable but is normally not painful. The number of treatments needed varies greatly depending on the particular disease and the person's general condition. An average course of plasma exchanges is six to 10 treatments over two to 10 weeks. In some centers, treatments are performed once a week, while in others, more than one weekly treatment is done.


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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to

Membership is open to patients, family, friends, caregivers research and medical personnel.


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!
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.
• • • • • • • • • • • •
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

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



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