Nathan finally began therapy Monday. For those who don't know, he is receiving PT, OT and speech. it was amazing, after years of wondering how he could do so well in school, but still we knew, things weren't exactly as they should be, it was such a relief to see these professionals zero in on what has been so elusive to doctors and educators. So, I encourage you, if something isn't exactly as it should be to have neuro phsyc testing, if it turns out okay, great! If not, maybe you'll be…Continue
Hello to you all, it has been a while since my last blog post. Marissa has been doing well until about a month ago, two years in remission this November, and it all seems to be starting again! I hate being fearful for her. However I am so thankful for this community website and for Soliris which is what she will most likely be starting depending on the next week of lab results.
Last month Marissa noticed passing dark urine again, she was put on antibiotics thinking it was a UTI,…Continue
Black Friday shopping on the internet? Planning your vacation, or perhaps doing some online holiday shopping?
Use www.igive.com as a shopping portal and support aHUS patients and their families by choosing The Foundation for Children with Atypical HUS as your Favortie Cause.
Added by Linda Burke on November 22, 2012 at 8:16pm — No Comments
There's days I wish I can go back to the person I used to be , No aHUS no Soliris no scars absolutely nothing . My mom makes me feel useless at times because of my sickness, saying I can't work or not letting me go out to hang out with friends. So what am I suppose to think now? Being aHUS was the best thing that ever happened to me? I don't think so. Being referred as a " sick person" isn't a great name. I never chose to get sick at the age of 15 , im still mad that happened to me , I don't…Continue
My daughter, Erica age 23 was taken off of birth control when she was originally diagnosed with TTP. She has sinced been diagnosed with aHUS and is on Soliris and feeling healthy! She complains when she gets her period of it being heavy and having terrible night sweats. She'd like to go back on birth control. My contact at Alexion could not give me any info, so I'm reaching out to any adult women with aHUS. Any advice? Is it ok to use birth control pills now that she is on Soliris? …Continue
It has been a long time since I have posted here. I just wanted to inform all of You that Anna is doing well. She is having FFP drip twice per month. Her labs results are stable. She is having fun, going to school, exercising etc. like any healthy child of her age. Doctors started to suggest, that She is just growing out from a-HUS, like form too small clothes :) . I hope it is true, and wish all of You here the same :)
Sunday was more of the same. Lots of pain, lots of diarrhea, lots of sleeping. Monday they have decided to do a scope to see if IBS or Krohn's so we have to get her to drink gatorade with Miralax that night so she is ready to go Tuesday morning. We are really struggling to get her to drink anything. It is getting harder and harder to get her to the bathroom as her legs don't seem to want to work. She is swelling and neurologically something isn't right. It was a long scary night and…Continue
Until August of this year I'd never heard of HUS or Atypical HUS. Lily was a happy, bubbly, 11yr old with food allergies as well as environmental allergies that kept us on our toes. She danced, played violin, did arts and crafts, was excited to take French this year and ready to face the challenge of a new school year. She's always had some minor health concerns and for the last year we'd been trying to figure out why the constant diarrhea, tired easily, couldn't run without becoming…Continue
Added by Kimberly Tressler on November 13, 2012 at 9:00pm — No Comments
Amazing news, Erica's nephrologist is so happy with her labs and urine output that she is off PD! Her creatine is 1.2 and BUN is normal and she doubled her urine output from the previous month! She's been on Soliris since 2/2011 and I had given up hope for kidney recovery. Now, I guess we watch and wait. Thanks to all of you who have gone on this journey before us and helped make possible the availabilty of Soliris!!
Following on the heels of some fantastic presentations at the 2nd annual NORD/DIA conference, an aHUS Advocacy Panel met on October 24th, 2012 in Washington DC. Representatives from Canadian, European, and multiple American rare disease organizations convened a meeting with a variety of people and organizations dedicated to exploring issues affecting atypical HUS patients and their families. Opening remarks were offered by Stephen C. Groft, Director of the…Continue
The Foundation for Children with Atypical HUS is pleased to announced that Dr. Tim Goodship has joined our “Doc to Doc Directory’ as a volunteer physician committed to provide information and outreach to medical personnel seeking information about atypical HUS.
For decades a global leader in various fields of aHUS information and research, Dr. Goodship has authored many articles about haemolytic uremic syndrome and has been an outstanding advocate for…Continue