The Atypical HUS Foundation

December 2013 Blog Posts (6)

Adults with aHUS - UNITE !

Are you an adult aHUS patient? 

     You are not alone!  There's been a noticeable uptick in the number of adults joining our online aHUS community...and we're happy you're found us.  One of the most frustrating things about any rare disease is the lack of local support groups, and it certainly is wearing to repeatedly answer the inevitable question, "What exactly is atypical HUS, anyway?".   It's a tough balancing act for all who deal with this disease. …

Continue

Added by Linda Burke on December 27, 2013 at 4:12pm — No Comments

Merry Christmas......

Hope everyone has a safe and healthy holiday!
Schroeder Family

Added by Jennifer Schroeder on December 24, 2013 at 3:55pm — No Comments

Update

  We celebrated Matt's 23rd birthday yesterday!  15 months after diagnosis, we still are endlessly grateful that he is with us. 

    I am looking forward to the future with so much enthusiasm for what is in store for him and all of us, with Soliris being available. 

   For anyone who has not attended a meet up, I encourage you to consider attending.  Putting a face and a hug to someone who has walked your path is unbelievable.  To reassure the family who is new to this disease…

Continue

Added by Barbara Farcher on December 18, 2013 at 10:40am — 4 Comments

Update on Ania

Hi :)

It has been a long while since I was posting here.  Ania had a long time of  peace- her labs were stable and she had normal live.  But she had grown quite a lot during this year and now it seams that her kidneys are not in enough good condition to manage with that bigger body.  We consider Soliris treatment, but we have to get the approval  from national health care center.

Added by Zofia on December 13, 2013 at 3:32pm — 4 Comments

My amazing Skype experience with ahusUK (and why I'm delayed on posting this story)

Hope everyone is well!  I had the most amazing chance to 'speak' to the ahusUK group at their meeting a week ago Saturday.  The cool thing was that my husband and I and the kids were driving up the highway from GA to MD for Thanksgiving and I was able to Skype in from the car with my phone to talk to the large group that was gathered there.  We have so much in common with our 'family' across the pond and I know there are many many of you here on this webpage as members.  I loved the…

Continue

Added by Phyllis Ann Talbot on December 4, 2013 at 8:59pm — 3 Comments

Just a few questions......

While Garrett was getting his first dose of platelets he got a severe pain in his back and got sick (throwing up) and every time he received it this pain would return, this was back in October he is still getting a severe pain onset in his back in the same spot then just as fast as it comes it goes I have said something to his doctor but the responce was we can send him to PT I don't think this is a pulled muscle as he had never had this before. His blood work is all normal (yay) but now he is… Continue

Added by Jennifer Schroeder on December 2, 2013 at 9:50pm — 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