The Atypical HUS Foundation

March 2012 Blog Posts (9)

Passing on the torch

Crazy March Madness here in Missouri again.  :)  Baseball started with a new team, kindergarten testing coming up and someone "forgot" to give us the permission to join the Jr. National Honor Society, (anyone want to bet he didn't want to stay after school any more?), not to mention this wonderful spring a month and a half early!  Bill is off tonight with the St. Louis Astronomical Society volunteering at one of St. Louis's premier children's hospital, St. Louis Children's...how cool is that…

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Added by Cheryl Biermann on March 27, 2012 at 8:01pm — 3 Comments

Inquiry on possible Soliris side effects....

My son Christian started his Soliris infusions in October of 2011. We had clinic in Houston, Tx. yesterday and his Doctor mentioned that he was seeing some unusual changes in his labs. When they did blood work on Christian a few months ago (in order to present him to transplant board) his antibodies were at 20%, last month labs showed his antibodies have gone up every month and he is now at 50% .  His platelet count had also gone down some.The only changes in his care has been the Soliris…

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Added by Aida Billingsley on March 20, 2012 at 10:26am — 2 Comments

LONG awaited update

The last time I posted, I stated that I went to California for a few days. Well, hahaha I went on yet ANOTHER trip on March 4-9 to Rutland Massachusetts. Oh my gosh, this place was so beautiful! I stayed at a farm called Overlook Farm which helps the Heifer project. Heifer, for those who don't know is an organization that raises animals to be donated to families who are in need in other countries even here in the United States. These animals help the families produce materials that can help…

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Added by Jessica Olivia Frysz on March 20, 2012 at 10:23am — 2 Comments

Well - as usual Hyde wants to keep us on our toes - and note to any Soliris and transplant folks out there

***quick addendum to our Carepage update below for anyone on here who's similar to us with t'plant along with Soliris therapy - want to see if anyone else has had similar 'odd' biopsy results?  The main thing (and I didn't put this on the carepage update) is that they found 'some damage' to the vessels in Hyde's/uncle Warren's kidney and our dr found this 'surprising' given how rock steady his creatinine, etc have been.  Hopefully it's normal t'plant stuff - but just want to know if anyone's…

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Added by Phyllis Ann Talbot on March 19, 2012 at 9:43pm — 2 Comments

aHUS Complications: Potential Impact for Multiple Organs

The topic of aHUS complications has surfaced in multiple commentary, including our website's Forums and blogs that have referred to potential effects of aHUS damage that impact other vital organs and patient health.  Multi-organ involvement is referenced by multiple researchers, and patients/families/medical personnel may access such information via links here as a starting point to further explore the topic.  A new term for multi-organ involvement is "extra renal", to indicate that the…
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Added by Linda Burke on March 15, 2012 at 1:30pm — 15 Comments

Inquiry

I have noticed in a few posts the reference that aHUS while in apparent remission can cause damage to other organs. Can someone share where this is coming from? Thanks

Added by Jonathan Aguallo on March 13, 2012 at 8:11pm — 3 Comments

Marissa Update

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…

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Added by Sharon Madrid on March 12, 2012 at 10:41am — 2 Comments

Update on Ivette

All is good with Ivette. She received good news yesterday. She has gained four pounds!!! So now weighing at 97, she's happy to add on some extra pounds and go back to wearing her clothes (before atypical hus episode). She got the green light from her doctor to go back to school! After two days of sitting outside the counselor's office she finally went back to the everyday routine. Her school has accommodated her with an elevator pass, she isn't obligated to participate in physical education,…

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Added by Jessica Rios on March 6, 2012 at 10:47am — 2 Comments

New News and date to 'stress' over ;-)

hi everyone, was waiting to get through this week to update all, on the 'good news' front - I ACCESSED Hyde's PORT!!!! and DREW BLOOD, and DID HIS SOLIRIS INFUSION, and SPUN OFF THE BLOOD IN THE CENTRIFUGE WE ARE BORROWING! OK, so the amazing home health nurse was sitting right next to me the whole time, and we practiced on a dummy for a few hours before - but still! I was very excited and so was Hyde. We are going to have REALLY cool science fair projects when the…

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Added by Phyllis Ann Talbot on March 2, 2012 at 9:26am — 3 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.
  
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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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