I have very good news to share with everyone. My little girl Mine Vosloo was diagnosed with aHUS Sept 2009. She had factor H problem. In three days time her kidneys has shut down and she was very ill. After she was diagnosed with aHUS we spent 10 months in hospital not even going home for an afternoon. She had in total about 29 blood transfusions and plasma pharesis and transfusions. Her blood pressure was very high and she started getting very bad fits. I was so lucky to find a doctor in Sandton, Johannesburg (South Africa) and we started treatment with him October 2010. End of October 2010 he removed both Mine's kidneys to stabilize her blood preasure. Now we had to keep strictly to 500ml flued intake in 24 hours and my 8 year old had to go on a special diat to control her potassuim. What an absolute nightmare. She was steeling water out of the fountain, out of the fridge and I had to lock everything away from her. I did not want to do just a kidney transplant with the drug Ezcluzimab, because that did not take this bad disease out of my little girls body. I needed a cure for my child and me and the doctor decided to do a liver and kidney transplant. This is the good part. My 8 year old child had a full liver and kidney transplant 8 weeks ago, and she is doing so well. The doctor followed a plan he had worked out and we did it without the Ezcluzimab. My child skin has changed and it is smooth, she did not have one ceasure again, her HB and Platelet counts came up by itself and her compliment levels are back to normal. WE ARE HEALED TREW THE HELP OF GOD AND OUR CLEVER DOCTOR. The little girl I knew before she got sick, is slowly coming back and she is laughing and playing again and our lifes is slowly coming back to normal. I don't have to fear the disease any more and she will have a better quallity of life. If you have any questions, please I will share our experience with you and we will help were we can. To all of you fighting this bad disease, I can just say don't give up. We are living proof that you can beat this. God bless all of you.
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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.
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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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 week window before your custom bracelet is shipped. In a rush? Contactlinda@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 Linda@atypicalhus.org