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