The Foundation for Children with Atypical HUS

Well, life in general has been good, I've gotten over the fact that my potential donor backed out on me. Ever since that day, life has been a roller coaster. My own mom brings up a point that she would like to get tested again, but we have one mian issue on our hands and that is Facter H. Would the factor H be a problem? My mom contacted my very nice and helpful transplant coordinator at Johns Hopkins to see if the factor H would be an issue, she is going to take that up with the team to see if there is some kind of hope that could come out of this. A day after my mom says this, my potential donor contacts me again, and says that Johns Hopkins contacted him, asking if he is still interested in donating, loan and behold he says to them that he is still willing to donate. I'm being confronted by another person at my school who would also like to be tested, it's strange how God works, but somehow he will choose the right one. It would be nice if my mom could donate, she has been wanting to do this since I was first diagnosed, but she was never a close match, only my dad was. My sister says to me today that she would be more than willing to donate, however, she wants to have kids, and in order for her to do that, she needs 2 kidneys to do that, if she gave me a kidney now and then tried to have children, it would be putting strain on her body. As loving and generous my sister is, I can't accept that gift from her, not right now since I do want nieces and nephews someday, so she is my back up.

It has been, without a doubt a roller coaster ride, my life is never ending (good thing). I've been keeping up in school, got keep up there, or else I'm in trouble. I have my fistulogram on Tuesday at 12pm, and who knows, maybe I can go and watch my dance class (if all goes well). My preceptorship- Oh my gosh, I'm enjoying that! I've intubated so many dogs, that it's not even funny, I've collected blood, ran hearworm tests, have heat fixed and stained some ear smears to look under the microscope, have restrained some animals, including a guinea pig, have taken and developed x-rays of some interesting animals. I have seen some very interesting surgeries as well, all in all I know this is what I want to do, but in maybe a zoo or aquarium setting. I enjoy animals behavior as well, so who knows, maybe somewhere doen the line you'll be seeing me in a seaworld show or something hahaha.

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Comment by lisa ann peterson on March 19, 2010 at 12:40am
god bless jessica..hang in there and keep your chin up iam so glad to hear that you are staying positive in all the chaos..
Comment by Jessica Olivia Frysz on March 14, 2010 at 3:42pm
Hahaha Cheryl, actually that would be a dream of mine, to work with the killer whales :) Not the sharks, possibly the dolphins. We will see where life will take me of course. I would love to work in a zoo or an aquarium of sorts.
Comment by Cheryl Biermann on March 14, 2010 at 1:33pm
With the hard work,you your mom, dad, doctors & nurses have put in just keeping you healthy, you'd better stay out of the Killer whale tank and sharks! Just kidding.

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

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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