The first report on what 227 aHUS patients from around the world told us about their aHUS diagnosis experience and their perception of it has been published today on aHUS Awareness Day 2021.
So much information has been provided by patients that it would fill a book. So instead there will be several reports covering all aspects of the aHUS diagnosis process.
The first report provides details of the characteristics of the participating patients and the high level process measures of timeline, health status ( before, during and after) and outcome perception. Viewers can read and download the report via the special portal on our home page click HERE ,
The report gives unique insights into the different as well as common experiences of patients going through an aHUS diagnosis process. And what patients feel about it having done so .
It is unique because this is an aHUS article reporting from the patient’s perspective not from medical records or clinical observations. The patients speak for themselves as they would in social media forums, or aHUS patient gatherings. The difference this time what they say has been captured.
aHUS patients reading this report can compare themselves with a wide but representative spectrum of experiences for the first time. New patients can learn from what others have gone through. In doing so, they can realise they are not alone and they will fit somewhere in that spectrum.
Clinicians reading the report will find a wealth of data and statistics they will not have seen before. They too can compare where their patients would fit into the process outcome spectrum.
There is more to come.
Each of the process steps will be reported on in more depth , with greater drill down into the data that Global aHUS patients have provided.
Until then, it is recommended that the first report be read, there is much to be learned from it. What ever your knowledge of aHUS is.
The new aHUS alliance Global Action website facilitates easy sharing of our articles.Please share widely. Not just on aHUS Awareness Day but at anytime.
The new website also permits moderated discussion through the comments facility at the end of each article. Viewers are encouraged to say something or ask questions about the first report. A debate would raise even more awareness.
Article No 460