The Atypical HUS Foundation

September 2013 Blog Posts (6)

NORD hosts ORLANDO aHUS Meeting

Hi all,


I just wanted to write a quick note to share my experiences at the NORD Conference in Orlando this past weekend.  This was the second NORD AHUS conference that I attended.  The first, being the one held in Atlanta last February.


I cannot say enough about the wonderful opportunity provided by these conferences.  It is such a wonderful thing that NORD, The Foundation for Children with Atypical HUS and Alexion all come together to provide such a unique…


Added by Melissa Hearn on September 24, 2013 at 10:26am — 3 Comments

Stem Cell

Hi everyone, I hope that everyone is doing well.  It's finally cooling down out here in Montana and I'm thankful for that!  I was just wondering if anyone has heard anything about stem cell transplant and aHUS?  My mom had a doctor from Canada talk to her about it.  I've been having a lot of problems with nausea and vomiting lately.  Had to go into the clinic last week because I was so dehydrated, my potassium was very low, and my creatinine took a jump to 7.7.  The week before it was 4.8.…


Added by Kristen Bruner on September 23, 2013 at 3:20pm — 4 Comments

Global Genes aHUS Meetups: HOUSTON, Oct. 25th-26th

Looking for information about aHUS? 

Join us in Houston, Texas on Saturday, Oct. 26th for the Global Genes: RARE Project aHUS Meetups.  This is a great opportunity for  aHUS patients and their families to connect and learn.  Registration is free, including the Oct. 25th dinner reception and one-night hotel stay at the Marriott Houston Airport Hotel. (Participants are responsible for travel costs.)



Added by Linda Burke on September 22, 2013 at 11:28pm — No Comments

So it's been awhile.....

Well I'm first going to apologize to my Ahus friends for not sharing all that has happened in the last 3 months... So first Chloe actually had her biopsy the first week of sept.. She bled a little more than normal and she was not happy about that but she is healed up now and back to her beautiful self.. Second we just celebrated her 9th birthday what a blessing every day has been with her I'm great full for every day and every moment I get to be in her presence I'm blessed to have my beautiful… Continue

Added by lisa ann peterson on September 22, 2013 at 4:00pm — No Comments

Virus and Cold Season

     With the onset of school and the weather changingmalso comes the viruses most kids get through with a bit of pampering by Mom and Dad or Husband and Wife.  For our group of aHUS patients, however, it usually means more discomfort, more medicines, longer recuperation and even hospital stays.  I'd like to share with you something we have done periodically through the years when we knew Nathat would be more vulnerable, for example, after surgeries or other illnesses.  

1.  Hand…


Added by Cheryl Biermann on September 6, 2013 at 8:34am — 2 Comments

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