The Foundation for Children with Atypical HUS

Just a little update on Marissa, she is doing well and still in love with her horse Chief.  She is down to getting labs once every two months now, and doesn't even need me to sit beside her while she has her blood drawn anymore.  Yesterday my son, her older brother noticed that her eyes were pretty swollen and alerted me to this.  That was what got our attention when we were trying to put all the unusual symptoms together a couple years ago.  I took her in for labs again yesterday, even though she had just had them done last week, and her Creatinine was still good, last week it was .5 and yesterday it was .6   I did however read that although she is in "remission" other organs could still be affected from the disease.  She of course is still on a handful of meds for high blood pressure, but is there anything else I should keep my eyes out for?

I would love to hear any suggestions or advice you feel would be helpful.  Thanks!

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Comment by Sharon Madrid on March 14, 2012 at 10:32am

Thanks so much Cheryl.  I contacted her Nephrologist too and also made her appt a month sooner to see him, which is for the last week of this month.  So far her energy level is still good, that was also a big indicator for her as well, which was very odd since we were on vacation when her energy greatly declined.  

I will be keep a close eye on her for any other symptoms, it helps to be reminded what all to watch for, so I really appreciate your advice.  Thanks again!

Comment by Cheryl Biermann on March 13, 2012 at 5:56pm

keep her under close watch, if that is her "sign" don't pass it off as maybe allergies.  Look for all the classic things, you can check for puffiness elsewhere by pressing her arm or leg to see if they stay dented longer than usual or don't return to her normal coloring.  Ask her if she is peeing as usual, any darker, going less often, is her energy level stay stable?  For us energy level was a big indicator as was, fever, stomach problems, weight gain.  If she has a fever assume the worse.  Keep in contact if symptoms accumulate.  Unfortunately, except for the kidney signs other symptoms are usually so mild they are medically undetectable until accumulated damage finally shows up.  You did very well in having her labs done, don't be afraid to ask for more.

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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.
  
• • • • • • • • • • • •
  
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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Foundation for Children with Atypical HUS
C/O Deborah Lewis
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