The Atypical HUS Foundation

December 2012 Blog Posts (8)

Check in - Benjamin Aguallo

We wanted to wish every the very best of Holidays. As we read the recent blog posts our prayers and thoughts are with those facings current aHUS relapses / new diagnosis.



We did want to post a quick update on Benjamin. As many of you know, Benjamin started Soliris in early fall after his 3rd relapse. He has a mutation of his Factor H protein. So far, we have been very pleased with with Benjamin's health. Labs continue to come in at normal levels and little variation. We also check… Continue

Added by Jonathan Aguallo on December 29, 2012 at 8:26pm — 3 Comments

Marissa's biopsy results

Marissa had her biopsy this last Monday. We stayed at the hospital waiting for results til Wed. but came up with no answers...They don't believe that it is the hus causing the symptoms this time, but don't know what it is.  Hopefully we will have some kind of understanding by Christmas Eve...and go from there.  Dr. did say that he doesn't want to start soliris until he is sure it is an hus relapse.  

It is definitely frustrating not knowing as I am sure you all know where I am coming…

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Added by Sharon Madrid on December 22, 2012 at 1:18pm — 15 Comments

Samuel is Amazing

I will never look at Thanksgiving the same ever again.  Samuel had his 2nd flare up on Tuesday, 11/20 and ended up in emergency surgery on Thanksgiving day for a PD catheter.  This 2nd flare up was way worse than the 1st.  By the Monday after Thanksgiving, he was still not able to keep any food down and looked near death.  By the following Wednesday, we were finally able to get him to keep a couple ounces of breastmilk down.  He was not even getting fluids because his blood pressure was at…

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Added by Kimberly Lancaster on December 19, 2012 at 10:44am — 8 Comments

Chloe and Solaris update

Chloe has had 3 treatments of Solaris now and there has been no change so far in her c3 and c4 and also no increase in her amount of energy. She has been getting cold after each treatment so I talked with the infusion nurse and will talk with dr h about running the infusion at a slower rate because she did fine after the first one and it ran slower. Also she has had a terrible stomach ache since we got home from infusion I'm gunna call dr in the morning if its not better. I'm not sure what all… Continue

Added by lisa ann peterson on December 11, 2012 at 12:01am — 3 Comments

Infants with ahus being treated with Soliris

Our daughter was diagnosed with ahus at 7 months old.  I have talked with several of you on here about the treatments your children are taking and frequency.  I was wondering if anyone else has an infant being treated with soliris and what the dosage and frequency is.   I would just like to compare notes on the treatments and results.  Thanks

 

Dustin Wiggins

Added by Dustin G. Wiggins on December 10, 2012 at 11:38am — 9 Comments

Isla has blood in her urine

We just took Isla yesterday for a soliris treatment.  She had been sick a few days ago and we had a blood test done to make sure her ahus wasn't kicking in.  Her Hemoglobin had actually went up to 10.8(labs week before showed Hemoglobin at 10.2).  Her platelets were 250.  We went for her infusion yesterday and her Hemoglobin had dropped to 9.9 and platelets were 170.  Our doctor was OK with the results and said there was no need for concern.  Her creatanine was up some to 1.6 but he said…

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Added by Dustin G. Wiggins on December 7, 2012 at 7:38pm — 8 Comments

9months and counting! (no kidney folks), but my job!

Sorry everyone that I haven't been on here in a LONG time, I have been quite busy lately.  Since the last time I posted; I'm sure you folks read that I had started an LVT job. Well, I am STILL working at it- 9 months now and I am enjoying it, but it is very hectic. I have begun doing surgical assisting, which is pretty interesting.

 

No news on a kidney just yet, but I am holding up my head high in hopes that something will certainly come sooner than…

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Added by Jessica Olivia Frysz on December 4, 2012 at 9:41pm — 3 Comments

ADULTS Can Have aHUS? Yes....

     Over the past couple of years, new information about atypical HUS has been slowly filtering from the research and clinical arenas into journal article and research papers available to patients and their families.  Along with this new information has come the need to dispel commonly held information that now needs to be updated to reflect current medical fact.

*  Adults can be diagnosed with atypical HUS.

*  aHUS affects not only the kidneys, but damage can also occur in…

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Added by Linda Burke on December 2, 2012 at 2:30am — No Comments

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WELCOME - JOIN US!

The Atypical HUS Foundation 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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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