The Atypical HUS Foundation

I hope that everyone had a great Thanksgiving. My Thanksgiving was awesome! I got to meet my 3 month old cousin Alexis Channing :) She's so precious; didn't get to hold her, because A. I wasn't feeling too great (didn't want to give the little one my germs) B. everyone was hogging her already...lol. My cousin Joey and his wife are her mom and dad, and I can tell that they are very proud of their little girl. Joey often sees me, and says "WOW you're 21 already?" He oftens goes back to the time when he used to babysit for my sister and I, this often makes me feel embarrassed at times, but very proud, because he had the practice for when he eventually had Alexis (besides taking care of his brother and sisters). It's very hard for Joey to be away in Georgia, because he often worries about me as well as everyone who lives here in Buffalo NY. It's understandable, because I know how much he wants to see me get a kidney, he was even asking me my blood type, I could never truly accept a kidney from him, now that he has a family of his own, it wouldn't seem right. I have gotten offers for donations, which is SO GREAT, now that I am being worked up, but it's a long long long treck ahead until I can actually accept those offers. I have now realized that I am thankful to be alive, even though there is no cure for this disease yet, I'm thankful to have made it this far, not ever knowing what will happen in the future, living life spontaneously often has its perks I guess.

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Comment by Jessica Olivia Frysz on December 13, 2009 at 1:31am
oh I'm feeling better, not totally 100%
Comment by Grace on December 3, 2009 at 6:25pm
That's great you have a wonderful and supportive family including a cute little new cousin! I hope you're feeling better now.
Comment by Bill Biermann on November 29, 2009 at 11:33am
What an awsome family and friends you have,sometimes it's the little things that make us realize how special the gift of life is; so glad your family reminded you of what you already knew. Alexis sounds charming!

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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 info@atypicalhus.org

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.

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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.
  
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 info@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 info@atypicalhus.org

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