The Foundation for Children with Atypical HUS

 

Hi Everyone!

 

Jack came home from the hospital on Monday - this week was a little overwhelming, just trying to adjust to the sudden, new and different lifestyle. Clinic twice this week - modifications to some meds; phosphorous, potassium and magnesium on the low side, so taking supplements. Otherwise, he is feeling great and it's amazing how healthy he looks! We still want to shield him from the outside world, but are trying to be sane about it.

I had taken last week off, but am back to work; exhausted right now - I think the last two weeks are catching up! TGIF!

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Comment by Jessica Olivia Frysz on July 5, 2011 at 2:24pm

Dana:

Glad to hear that Jack is doing well with his new kidney. Yes, the lifestyle change can be quite overwhelming at times, with the doctor's appointments and all the new medications and all of that stuff...but you will get through it, it's just another new way of life for Jack. Jack will also need to learn some new things as well. You sound almost like my parents. My parents are going to be wanting to shield me from the outside world when I get a transplant, but don't go too crazy...gotta have some freedom at times.  They are sort of like that now, especially when I wanted to work with animals, they were sort of weary of it, but once they saw I could handle it and I had people to back me up...then they were ok with it.

Comment by Cheryl Biermann on June 24, 2011 at 10:20pm

Hi Dana,

Congratulations on being in your own home. now is the time to accept all those offers of help!  Yes, do call them back and say, I need to nap instead of doing laundry~Please come by and help and the angels will smile on you!  Some people love to buy things as a way to convey their joy for you, if they ask what to get for Jack, ask for gift cards from  the grocery store, their prepared meals are usually less processed than take out, therefore probably better for him.  Take care!

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.
  
• • • • • • • • • • • •
  
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.
  
more factoids...

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