The Atypical HUS Foundation

March 2013 Blog Posts (12)

aHUS Patients appeal to the Prime Minister

Six aHUS patients family or carers went to Downing St this week to present a paper petition to the Prime Minister.

The petition called for him to tell the NHS to implement treatment for all aHUS Patients who need it immediately.

The 3000 signatures on the petition were raised in just five days! The public are supporting our call for justice

More pictures of the event and the aHUS Super Six can be seen by clicking…

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Added by Len Woodward on March 29, 2013 at 6:29am — 6 Comments

Tingling sensation during Soliris Infusion

My 23 year old daughter has been on Soliris since 2/2012 and has always tolerated it, well.  However this week during her infusion she experienced tingling in her fingers and lips towards the very end of the infusion.  Her nurse contacted doctor who said to give her Benedryl.  This stopped the tingling.  Has anyone else had a similar experience on Soliris? 

Added by Denise Schmidt on March 23, 2013 at 4:54pm — 7 Comments

Edema in feet

Hi! just wondering what your past experiences are with swelling in the feet. Ethan's feet swell pretty good during the day (just like mine when i was preggo with him-lol). We try to have his feet up during the day when we can and prop them up on pillows at night. His docters say this is normal and partly due to his medication. We weigh him each day and haven't had the rise in weight that they told us to watch for so they haven't been concerned. We are all adjusting our diet at home and doing…

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Added by Anne Bruns on March 21, 2013 at 5:14pm — 3 Comments

little girl in NY

Just wanted to share an experience of my sis-in-law. She is currently living in Endicott New York and recently went to donate platelets. She has been so sad that she is so far away from us during Ethan's new diagnosis and has been donating blood and plasma when she can. This was her first experience with platelets and all went well. When she finished she was eating at the snack table and picked up a flier. It was from a little girl named Chloe (2 or 3 yrs old) and thanked everyone for…

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Added by Anne Bruns on March 21, 2013 at 5:00pm — 3 Comments

Iowa conference

Hi everyone!  Hope everyone is doing well - wanted to give everyone a quick update on the interest in, and timing of the next Iowa conference.  First off - there is DEFINITELY enough interest in this - the response was pretty overwhelming of those interested.  As for timing, taking into consideration the survey results (which were pretty evenly split between Fall 2013 and Fall 2014), input from Dr. Smith from the University of Iowa, and the regional meetings that are still being added to the…

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Added by Phyllis Ann Talbot on March 21, 2013 at 11:45am — 5 Comments

San Diego childrens

Does anyone know anything about San Diego childrens I was wondering about docs over there???

Added by lisa ann peterson on March 18, 2013 at 11:44pm — 1 Comment

update on Nathan

Just a quick update on things that are a result of long-term illness.  As you know, we have been going to 3 one hr. sessions of therapy a week beginning in Sept.  Just had my first regular school visit with all the teachers who are reporting an increase in his participation in class as well as observing his increased socialization with his peers!  Grades are still in the A and B range, but one in our position needs to realise all the adaptions they are making for him.  The grades he is now…

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Added by Cheryl Biermann on March 18, 2013 at 4:32pm — 1 Comment

Hi! We are new!

Hello! My name is Anne and my 8 yr old son was diagnosed earlier this year with aHUS. He presented at his pediatrician's office after two days of throwing up  (thought he had the flu) and dark red urine (definately knew it wasnt the flu!). After a few initial blood and urine tests our ped. dr sent us immediately to Primary Children's Hospital in SLC, UT. We live just under an hour away luckily. They told us it was HUS and at first thought perhaps Ecoli based as they had seen a rise in it. He…

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Added by Anne Bruns on March 18, 2013 at 12:28am — No Comments

Hi! We are new!

Hello! My name is Anne and my 8 yr old son was diagnosed earlier this year with aHUS. He presented at his pediatrician's office after two days of throwing up  (thought he had the flu) and dark red urine (definately knew it wasnt the flu!). After a few initial blood and urine tests our ped. dr sent us immediately to Primary Children's Hospital in SLC, UT. We live just under an hour away luckily. They told us it was HUS and at first thought perhaps Ecoli based as they had seen a rise in it. He…

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Added by Anne Bruns on March 18, 2013 at 12:28am — 6 Comments

Soliris

Dear friends,

I was diagnosed with aHUS in June 2012.

I was back up from my trip to Thailand jungles and was so happy from this trip. (I'm writing this because may be someone made the same trip and it connects somehow).

Some day at May I felt a worrying pain in upper chest and was hospitalized in Edith Wolfson Hospital of Israel.

I fall asleep after some drugs and don't remember a half, but when I woke up I asked my mother which was near my bed in hospital: "Hour…

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Added by Artyom Smerdov on March 9, 2013 at 2:08pm — 5 Comments

aHUS Meeting in NJ, April 26-27

CONNECT.     SHARE.      SUPPORT.

Join us in New Jersey - April 26-27, 2013

For A Regional Meeting for People Living with aHUS…

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Added by Linda Burke on March 8, 2013 at 11:47pm — 2 Comments

Soliris update

Lily had her Soliris treatment yesterday and her CBC came back perfect. However her face is puffy and her LDH is elevated to 657 which is higher than last treatment day of 618. Her HAP is also only back up to 29. We will chack her labs again on Monday to make sure the Soliris improves her numbers. She is now about 86 lbs so we are pretty close to needing higher dose of Soliris. She has grown 2inches and gained 10lbs since the hospital. Actually grew 1/2 inch since last treatment. Otherwise she… Continue

Added by Kimberly Tressler on March 8, 2013 at 9:05am — 2 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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