Not many people know that and I must admit that I didn't until an email friend recently pointed it out to me. She ('Susan') wrote to me not long after the 'Dr Google Revisited' post, perhaps to inform me that for some, the Internet is the only source of medical information available.
Rare Disease UK conducted a survey "Experience of Rare Diseases: An Insight from Patients and Families" in 2010 and some of it will make your hair curl! Click on the link provided in the summary and you can read a fuller version of the survey
Amongst the findings in the summary are that patients and families affected by rare diseases wait too long for a correct diagnosis (some unfortunate souls wait as long as twenty years). A worrying number receive the incorrect diagnosis before the final diagnoses and patients and families worry about the level of awareness of rare diseases among healthcare professionals.
Importantly patient organisations play an important role in the diagnosis of, and are often the main or only source of information for rare diseases.
I asked 'Susan' whether she had consulted Dr. Google - for although we have corresponded with each other for nearly two years - I had never asked her before. With her kind permission I detail extracts from her response.
"Yes I did consult Dr Google, this was during my diagnosis period, but the first reason I did this was because I had been tested for things I had never heard of, and it was never explained to me (what the test was and why and what it was for) - (I thought this was because they were protecting the patient, not wanting to scare me, but later my thoughts were - they don't know!) This I found quite daunting because I grew up thinking like most, that if you're ill, you go to the doctor or hospital and they make you better!... So I was thrust into a situation of also finding out that doctors don't actually know everything as I had previously thought...