The second article in the series about the aHUS Diagnosis Process has been published on the website today. Research made possible through the contributions of 227 aHUS people from around the world.
It can be read and saved from the home page portal and using this link HERE.
The second report focuses on the front end of the aHUS diagnosis process from first noticing symptoms through first seeking medical advice and what happened on entering the primary care pathway up to referral and entry to specialist care.
This is the time when most aHUS patients’ health falls dramatically and rapidly after first symptoms appear.
Although a small number of patients appear to have observed an insidious slowly developing illness.
Others are already facing another clinical condition like pregnancy, transplant or cancer before their aHUS experience.
For those patients entering primary care seeking an explanation for what ails them, getting that explanation proves to be a challenge. It will leave them with a diagnostic uncertainty, when evidently there is something seriously wrong happening.
‘When you hear hoofbeats, don’t expect to see a Zebra” applies when primary care clinicians are faced with people, who have a rare disease and who are becoming a medical emergency. They can only do what their training, skills and knowledge allow and hope they do not miss opportunities for a correct diagnose.
This report gives insights into this sub step in the aHUS Diagnosis journey and why it results in the way it does.
There is more to come. The next report will focus on patients’ experience in specialist care.
HERE you can see the First Report on the aHUS Diagnosis Process – the high level process measures.
Learn More: View survey questions & results HERE
NOTE :The new aHUS alliance Global Action website facilitates easy sharing of our articles.Please share widely.
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 aHUS Diagnosis Process. A debate would raise even more awareness.
Article No. 476