Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

[Graham Head]

I think the main problem with having L E M S is the lack of recognition. 99.9 % of medical practitioners have never heard of it. Recently I took part in a final year practical medical student exam as a medical specimen. The exam invigilator, a consultant had never heard of L E M S . Which begs the question “ How can you set a question when you don’t know the answer?”

[Price Wooldridge]

@ghead I think you are substantially correct that most in the medical field don’t know of LEMS. Through the years I’ve felt I was often an educator for the disorder when in clinics, the ER, or the hospital. I’ve spent plenty of time talking with med students, residents, and others about LEMS. Last time I was in the ER, they sent a 4th year to me, and we talked about half an hour on it. He was very curious and eager to learn.
There are exceptions. My pulmonologist knows of it and refers to it by its older name, Eaton-Lambert. I had a visit with my retina doctor last year, and from questions and the knowledge he had, I knew he made the effort to look it up and study before my appointment.
The other thing I find, is many if not most health staff, physicians and nurses, will tell you they know what it is, when actually most of them don’t. I never assume, unless they’re obviously knowledgeable, that I don’t need to explain the problems with LEMS and what it is.