The Foundation for Children with Atypical HUS

Well, I received an email from my potential kidney donor. He received news that he has been approved to get tested to become my donor officially. I am approaching my 22nd birthday on the 23rd of this month, and I am becoming more and more hopeful for my kidney transplant, that I will be able to have a normal life soon enough. I am not trying to rush things by all means, this could be my one and only shot of becoming a successful transplant recipient. As my former nephrologist told me "you are a model dialysis patient, but we want to make you a model transplant patient." It is sad to think that my former dialysis team will not really be able to see me get the transplant, like they did the last time, but of course I will be keeping them updated as much as I can, every step of the way. I just hope that I can go on the end of year trip with the vet tech club at school as a possible celebration to my last days as a dialysis patient.

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Comment by Crystal Ferreira on February 20, 2010 at 1:10am
Jessica,
This is wonderful news! I'll be thinking of you on Tuesday, as I will also be celebrating my birthday. Many good thoughts and prayers to you.
Comment by Cheryl Biermann on February 19, 2010 at 12:01pm
Jessica-how truly blessed you are! I will now pray he is a great match! Even if not, isn't it heart-warming to know someone is willing to do this for a stranger? But I will hope and pray it works out!
Comment by Grace on February 18, 2010 at 7:57pm
How exciting to have a potential donor! You have been waiting so long, I hope everything works out for you ASAP!
Comment by Jessica Olivia Frysz on February 17, 2010 at 11:31am
Cheryl,
I did not already know my donor. I placed my profile on a website called kidney connection, which was suggested by my former dialysis nurse. I went on there filled out my profile and waited. I did get one other contact, but it was a fake, and then Matt (my donor) came into the picture, a few months after. He sounds like he is excited to try and do this for me, plus is a military guy and served in Iraq and wanted to give back somehow, from what I am understanding. He chose my profile out of several other people....so yea I can see you doing back flips :) My mom was even stunned, and I am not even listed on the national donor list yet, and already I found a donor( if he matches that is.)
Comment by Cheryl Biermann on February 17, 2010 at 10:56am
OOO! How exciting! Can you see me doing back flips? Praying it continues to go so very well-I do have a question though, did you already know your donnor? He must be as excited as you!
Comment by Sara Palmer on February 16, 2010 at 4:10pm
I hope you get the life you truly deserve Jessica,
Comment by Heather Still on February 15, 2010 at 2:32pm
Great news. Very exciting. Thinking of you.
Comment by Donna Kolp on February 15, 2010 at 2:06pm
Fantastic Jessica!!! My prayers are with you!!
:)
Donna
Comment by Svetlana Finley on February 15, 2010 at 2:14am
Awesome!! We are excited for you!!
Comment by Amy Swarbrick on February 14, 2010 at 11:45pm
Good Luck....we are so excited for you:)

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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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