The Atypical HUS Foundation

June 2010 Blog Posts (6)

National Kidney Foundation Walk

Nathan and his friend, carry the Cardinal Glennon Banner which includes names of all the children being treated with some form of kidney disease. This was the third walk in St. Louis, it was held in St. Louis University's Park which includes a 1 mile path inside the park. The park was wall to wall people. Representatives of dialysis units from various…

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Added by Cheryl Biermann on June 26, 2010 at 11:41am — 3 Comments

lil miss chloe

lil miss had her apt today..her bloodwork looked good.. but we got the results back to her antibody test and this was the test to show the amount of antibodies that she has built up because of transfusions and she has built up 41% dr. h says that puts her at a higher risk of rejecting transplant when that time comes this is not what i wanted to hear also he…

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Added by lisa ann peterson on June 18, 2010 at 1:30am — 2 Comments

delayed update, been a busy busy girl.

Well, I've been on summer vacation now for about a month-2months now and I've been mainly sitting at home, catching up on some sleep and reading my favorite book, "Eclipse." I had a dance recital which we well and then I paeticipated in the kidney walk, which went well even though it rained, I managed to walk the entire thing with a very close friend of mine at my side.

I then went to a patient education meeting as a patient representative, which in return I got roped into…

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Added by Jessica Olivia Frysz on June 15, 2010 at 11:20pm — 4 Comments

Clinic and vacation

Clinic and Vacation

Hey there everyone - just got back from a LONG clinic today. For the #'s folks here we go - BUN is down to 52, creatinine is down to 9.5, Potassium is down to 4.3, Calcium is steady at 9.8, HCT and HGB are still low at 9.3 and 26, and platlets are steady at 225. The big #'s news is his phosphorus - which had been giving us fits for awhile (last month is was 11.6 and this needs they…

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Added by Phyllis Ann Talbot on June 14, 2010 at 2:51pm — 7 Comments

Ash turned 2 today

Hi all,

My little man turned 2 today. It funny how his birthday takes on such a huge meaning for me. I think this is because we were not sure if he would make it to his 1st bday let alone 2nd. I find myself feeling so protective of this day and dont want to share it with anyone else - to me this day is all about Ash. These feelings have come up because my sister in law is due to have her baby and i have been petrified that she would have her baby on the same day as Ash's bday. I know…

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Added by Kerri Grey on June 10, 2010 at 7:43am — 6 Comments

Update on Ben!

Hi everybody! I am glad to report that Ben has done well this week. He had a little set back last week when he had so much fluid that some was collecting in his lungs. They ended up putting him on 2 fluid pills and that helped a lot. I got a call from my brother and it looks like Ben was able to go 2 days with no treatment and bloodwork looked great. Does everybody else feel like they are too afraid to get excited because everytime you do something happens. We are just taking it day by day and… Continue

Added by MARCIA AGUALLO BAKER on June 8, 2010 at 9:29pm — 3 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.


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.
  
• • • • • • • • • • • •
  
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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