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