Hi Len, I remember you v well and hello again! I just completed and submitted the questionnaire. I do live in China but am perhaps not typical in the sense that when I had a flare in Dec. 2014 I was lucky enough to be able to get to Hong Kong for very good (private) treatment. Eculizumab is not available in China last I checked and only privately in Hong Kong so one needs a good private health plan. My sense is that in China there is little awareness of the disease, though they know and can treat TTP. Excitingly, there is a rare disease Organization here but they didn't really know aHUS either. I was last in touch with them in about June 2015 so can update with them if there's interest. Kind regards! I'm so glad there's a survey! What's it for? For whom?
I trust that you had a lovely Boxing Day, and wanted to let you know that I toasted the Woodward clan while I popped my Christmas cracker on December 25th. And yes, I did wear my crown whilst serving holiday dinner to several extended family members! Hope you're enjoying a wonderful holiday season....best wishes for a fabulous year to come!
Len, it looks as though the Price's descended from Montgomeryshire, Wales. Montgomeryshire today constitutes the northern part of the principal area of Powys. Interesting. I'll look into the connection. Thanks!
My maiden name is Price. The Price's are originally from Wales. I'm going to go check on that right now. We also have something called Lynch Syndrome. Both of my sisters have it as do 2 of their daughters. Their other children haven't been tested. We have a host of other autoimmune conditions in our family. My husband's sister has Wegener's. She was diagnosed in her early 30's. After being very, very ill , hospitalized in critical care numerous times, my husband donated a kidney to her. She rejected it fairly quickly but was "managed" and completely rejected after 18 months. In 2000 I donated a kidney & she's still healthy today! Many times I wonder if all of these things have a commonality...beyond being human! :) Thanks for replying! I'll be praying for you!
hi len im new to the site my daughter cheyanne was only disgnosed three weeks ago with ahus she was really poorly and we nearly lost her ,thankfully at royal manchester childrens hospital they got her eculizumab at ten oclock at nite two hours after admission and over the last three weeks its turned things right around,just wondering when is there next meeting ide love to come n contribute and comment on this miracle drug
Can't believe you saw the article in the enquirer! Our 15 year old nephew has recently done his work experience with the enquirer and they allowed him to do the article. He didn't do too bad, a few inacuurancies but not a bad job for his first go. I have since had another journalist ask if she can also cover our story.
We really hope to be at the meeting in Solihull but need to sort a sitter out for the children but as soon as I'm able to confirm I'll give Ian Macersie a call.
Would be so good to talk with others that have been through the same .
Thanks for stepping up to post regarding the aHUS activities in the UK. You're most welcome to create a UK Forum, helping your UK patients/families gather in a central location and acting as a 'meeting place' online. Best, Linda