The Atypical HUS Foundation

September 2010 Blog Posts (9)

Senior Life and 18!!!

Hi everyone!

I know it has been awhile since I wrote about what has been going on in the life of Jonathan :) Jonathan started his Senior year of high school in late August, and is loving it! He is now going all day, except for when he gets his plasma transfusions, which is 3x a month. According to his teachers, he is an excellent student, doing well, and I was told that he is VERY social. LOL.....He actually told me he acts differently around us ( Mom & Dad). Well, I knew that :)…

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Added by Donna Kolp on September 28, 2010 at 6:39pm — 3 Comments

Update on Ben Aguallo.......



This is the first time that we, Jonathan and Beth, have posted an update on Ben Aguallo. We visit often and read the updates from the other members and we pray for each…

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Added by Jonathan Aguallo on September 28, 2010 at 10:17am — 4 Comments

Whew - hectic few weeks

Hi there everyone - I had to look back to see what was the last I'd written because it's been so crazy the last few weeks. Where do I start? Well - I guess I'll start with the not too fun stuff first - Hyde had a double whammy hit him last week - I swear - poor thing has to be one of the unluckiest kids on the planet - he started running a pretty high fever last Monday night (and some of you may remember we are a little nervous around…

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Added by Phyllis Ann Talbot on September 27, 2010 at 3:39pm — 5 Comments

softball tourney and chloe update

well good morning all... the softball tournement was a sucess we raised a little over 2,000 for the foundation and we had alot of fun doing it... there were 6 teams and lots of prizes.. next year will be even bigger i hope.. also just an update on lil miss sunshine she went to the doc last wed and Dr.H said that hopefully she will hold out till november and not relapse before then.. her ldh and creatnin were a little bit higher and we are still waiting on the c3 and c4 and…

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Added by lisa ann peterson on September 27, 2010 at 11:24am — 6 Comments

Hives

Has anyone had or heard of hives being related to this disease? Jacob seems to break out every ten days and is misserable! It seems like we can't go the three weeks that the doctors want us to for the FFP and epogen.

Added by Terry Huber on September 22, 2010 at 6:30pm — 9 Comments

Planning transplant using Soliris?

Our fourteen year old son Ian, is a dialysis patient at Childern's Hospital In Boston. He was first diagnosed with AHUS in 2000, and received a kidney transplant in 2002. However the HUS recurred within two months of transplant. Since then Ian has been on PD, and for the last three and a half years on Hemodialysis. He has complement factor I and MCP mutations.



The prospects that Eculizumab (Soliris) offers are very exciting to our family, as they must be to many others with AHUS. Ian's… Continue

Added by Peter Brown on September 15, 2010 at 10:07pm — 10 Comments

good stuff

we are getting read for the second annual "tuff hat softball tournement" cause we all wear tuff hats when we have a loved one battling ahus.. we are getting so stoked this will be the firat time we will be able to donate all monies to research.. thanks to all of my girls helping me put it on.. also lil miss is doing rather well except mommy has walking pnemonia i found out today and i got sick from lil miss so i will be bringing her in on monday.. i thought i just had a nasty chest cold but… Continue

Added by lisa ann peterson on September 11, 2010 at 9:23pm — 3 Comments

Pediatric CLINICAL TRIAL Link

Some news has been publically posted regarding the clinical trial of Soliris (eculizumab) for pediatric patients with atypical HUS. As an independent and unaffiliated organization devoted to education, support, and outreach for aHUS patients and families, this interactive website of the Foundation for Children with Atypical HUS recognizes that some in our community are highly interested in this trial.

On August 31, the National Institutes of Health posted an overview of the trial on…
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Added by Linda Burke on September 9, 2010 at 9:00pm — 12 Comments

aHUS and joint issues

Hi i was just wondering if anyone knows or has experienced whether or not aHUS can be linked with joint issues. I ask because my daughter had an appointment at our childrens hospital yesterday because she can not rotate her arms so that her palms can face upwards. They did xrays and it showed that she has no joint in her elbow and her 2 forearm bones are fused together. We have now been refered to a different specialist and a genetisist because they said that the type of thing she has is… Continue

Added by Kerri Grey on September 2, 2010 at 10:18pm — 4 Comments

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

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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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

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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