The Atypical HUS Foundation

Everywhere I look, there is death around me....I even face it every single day. From the time I wake up, to the time I go to bed, I often ask myself "have I really lived my day to the fullest today?" Granted I do often end my day with a dialysis treatment, but I don't regret being alive.

This morning, my Uncle Ray passed away, peacefully and alone, just the way he wanted it. At least, I did get to see him in his final days, that he was able to see me, before he passed. I did get to say goodbye to him, which was important to me, but mostly to my parents I think. Even though they didn't show much emotion, I could tell that it wasn't going to be long. I knew exactly what was happening to him, it just meant a matter of time, and he decided to go this morning, which is in a way a good thing, he's not suffering anymore; he's at peace.

That's how it should be, we should be able to pass the way we want to, not the way medicine tells us. We shouldn't be afraid of death....I somehow have learned to accept death. If it happens it happens.... God knows my time, when I'm ready and so forth.

My Uncle Ray will be with me always, but those cigarettes NEED to go, that's what caused his death, but I'm only one person.

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Comment by Lisa Goble on November 21, 2009 at 9:22am are a gift, and OH, SO WISE......wishing you peace. Uncle Ray IS in a better place. I am sorry you are hurting. Praying for your comfort.
Comment by Grace on November 20, 2009 at 10:19pm
I trust your uncle is in peace, and I hope you and your family find peace as well. Live a full life, but embrace each day. Gentle hugs.
Comment by Cheryl Biermann on November 19, 2009 at 8:15pm
Please accept our condolences. Just understand you uncle is probably from a generation that smoking was a normal thing, most people accepted it. To suggest not smoking in one's presence was unheard of. It's wonderful that he was at peace during his last moments, we will pray for 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.

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.
more factoids...

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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.)

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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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