The following blog was originally posted on the RareConnect global aHUS webpage:
Update: MARCH 30, 2016
NEW - Survey now in 6 languages, with survey end date extended until April 15, 2016 !
There are new 2016 aHUS global survey…Continue
Added by Linda Burke on March 17, 2016 at 12:30pm — No Comments
Hi ! Just hoping someone sees this and has some sort of idea as to what I am talking about. I was diagnosed with atypical HUS June 2015. Since then my kidneys have been improving but I have INTENSE left side pain. It is right below my left kidney. After ct scans, getting my appendix removed and ultra sounds. No one is finding a reason for my pain. I am so frustrated. I am learning what I can about AHUS but does anyone have chronic pain with this disease?
The aHUS Alliance, an umbrella group of 15 nations with aHUS patient groups, launched a worldwide survey of aHUS patients and caregivers to mark Rare Disease Day 2016 (29 February). A similar effort was conducted in partnership with RareConnect in 2014, with 214 respondents from 17 nations and responding to outreach in 6 different languages. The 2014 poll included questions on common themes familiar…Continue
Added by Linda Burke on March 8, 2016 at 9:00am — No Comments