The Atypical HUS Foundation

April 2013 Blog Posts (9)

NORD aHUS Regional Meeting New Jersey

I was fortunate this past weekend to attend the aHUS regional meeting hosted by NORD in New Jersey. My mother accompanied me since Jack and my husband took part in a motorcycle rally in Boston in support of wounded vets.

Special thanks to NORD for putting together such an educational and networking event!

More than 50 patients and caregivers attended . The majority of patients were adults, a few just very recently diagnosed.

We were treated to a fantastic… Continue

Added by Dana M Simone on April 30, 2013 at 8:13pm — No Comments

Phoebe - Update

I have been meaning for a while to update this blog.  

At some point in February, we finally switched Phoebe to Soliris.  We were watching the factor H autoantibodies decrease.  We were given hope that her autoantibody level would go to zero.  They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300.  At that point, we still decided to switch to Soliris for several reasons:

1. Plasma was scaring us, and it was taking 12 hours 2-3 times a…


Added by Brett Lettiere on April 24, 2013 at 4:05pm — 3 Comments

Chloe's endoscopy

Chloe had an endoscopy yesterday and they said her intestines look great.. They took a few biopsies and we will know by the end of the week if her stomach problems are from some disease process or If they are from abdominal migraines.... Also Chloe's treatments have been going well and her kidney biopsy is scheduled for June 27th in Seattle it's been the longest 6 months of my life... I'm very interested if its helping.... Praying for some answers and ohhh man was it nice to see dr h in Seattle… Continue

Added by lisa ann peterson on April 24, 2013 at 11:20am — 2 Comments

NEW! aHUS Video Clip Library



Now topic-specific video clips have been created as an 'aHUS Video Clip Library'. Finally, you can look up a topics such as 'Diagnosing aHUS' and see several physicians/aHUS clinicians provide detailed medical information. Culled from the full presentations at the Foundation's last aHUS Family…

Added by Linda Burke on April 23, 2013 at 12:51am — No Comments

Omeros and new aHUS treatment

Hello everyone.  It has been a while since I have posted but we have been super busy.  First a little update on Isla.  We have had a good last few months.  No major sickness to speak of and no major relapses since end of Dec.- first of Jan.  Most labs look really good except we are still a little low on the heme.  But she is holding the highest levels she has had since October with a heme value around 10.  We are praying and keeping our fingers crossed that this continues.  Now I was…


Added by Dustin G. Wiggins on April 23, 2013 at 12:00am — 3 Comments

IDEAS requested!

Recipie for kidney stones:

One aHUS patient, preferably ripe, (You can tell if they're ripe by noting the background, dialysis?, feeding tube? Years of aHUS service?)

kidney transplant with Soliris

new urin that has copious amounts of phosphorous and calcium

stich left over from new ureter site for collection of  calcium/potassium, (optional) to accumulate on

due to long periods where…


Added by Cheryl Biermann on April 17, 2013 at 10:30am — No Comments

Hike for Hyde, cool newspaper article, and yes - a broken collar bone oh my

Yeah - you read that right, Hyde broke his collar bone Friday night playing outside with all the neighbors. I swear you can't make this stuff up! And I was naively thinking we might get to skip 'normal' kid trauma given all the other junk he's been through - but obviously I was mistaken! I also have learned that a broken collar bone is a PAIN! I know no broken bone is a picnic but there is no real way to cast a collar bone so there is no real way to protect it. Hyde…


Added by Phyllis Ann Talbot on April 16, 2013 at 12:50pm — 4 Comments

April 26 & 27th - aHUS Regional Mtg in New Jersey


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

For A Regional Meeting for People Living with aHUS…


Added by Linda Burke on April 8, 2013 at 11:30pm — No Comments

Onward and Upward!

Just another little update on Nathan.  We have been attending Physical Therapy, Occupational Therapy and Speech Therapy once a week since September due to continued problems and even worsening of some things led us to a neurologist who recommended further testing.

Next week, Monday, the Physical Therapist is moving Nathan on to once a month rather than once weekly!  You would not believe the tools they have available!  We learned about "sleeping" muscles.  For these, she…


Added by Cheryl Biermann on April 4, 2013 at 10:18am — 2 Comments

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