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…

Continue

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…

Continue

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…

Continue

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…

Continue

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…

Continue

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…

Continue

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…

Continue

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…

Continue

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…

Continue

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

Monthly Archives

2017

2016

2015

2014

2013

2012

2011

2010

2009

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service