The Foundation for Children with Atypical HUS

Brandi's Birthday

Today, Brandi turned 12. Oh, how quickly the time flies. If no one new Brandi is a twin, and Brittany doesn't show any signs of having AypicalHUS, which we haven't had her tested yet, but plan on in the future. My babies are growing fast. Brandi has been in good spirits, and things just don't bother her, she takes everything with a smile on her face. Am so thankful for that. That this hasn't changed her personality is a blessing. We are still hopeful to do home dialysis, but she continues to lose blood. On Saturday, had to have 2 units. The doctors here at UHIC are trying to take Brandi off of her plasma infusions so we can do treatments closer to home, but am not sure that is going to work out. Just will have to wait and see......

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Comment by Cheryl Biermann on November 10, 2009 at 11:04pm
Good to hear from you Kathy. Don't worry if you don't get to that spot of not needing infusions, some of us never got there either, at least until the kidneys were completely shut down-no urine output at all. It sure would be nice if you were able to do treatements closer to home though. Give Brandi and Brittany both a big birthday hug from the Biermanns. Hope it was a great one!
Comment by Linda Burke on November 10, 2009 at 10:21pm
Hi Kathy!
Wow, how is it possible that our children grow up so quickly?!! Happy double birthday to Brandi and Brittany - did you guys have the opportunity for a fun birthday outing? We'd love to see some birthday photos posted of the girls when you get a chance. So glad we had a chance to meet at the U of Iowa conference - the aHUS team there is terrific, so it's nice to know that your family is in good hands with them. We're looking forward to hearing your family's story when you can catch your breath! Best wishes, Linda
Comment by Svetlana Finley on November 10, 2009 at 7:02pm
Happy Birthday Brandi!!!
When Anna was on plasma infusions, she kept loosing blood, then they switched to plasma exchange, that works better for her. I hope pretty soon her blood will stop going down and u will be able do dialysis home.
When was she first diagnose?
Comment by Amy Swarbrick on November 10, 2009 at 6:18pm
Big Happy Birthday to your girls:) Hope things start to get better for Brandi very, very soon. I'll keep my fingers crossed she will be able to do home dialysis soon.....wouldn't that be easier.

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The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
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