Dr KDM, Dr Patricia Salvato and Dr Lucinda Bateman

[NilaJones]

Hmmm... do

Ninety-three this year and in amazingly good health. She had breast cancer (at 93!) had an operation, and came through it just fine. Still sharp as a tack, too.

My father's side of the family has insanely good health.

-J

Hmm... do you think the diagnosis of EDS was accurate? It is common for it o skip generations or affect different generations to different degrees. Was your grandma a dancer when young or anything?

 

[JaimeS]

Hmm... do you think the diagnosis of EDS was accurate? It is common for it o skip generations or affect different generations to different degrees. Was your grandma a dancer when young or anything?

Nope - so far as I know, no one in my family is flexible like I am. I have always sat Indian-style (with both knees nearly touching the floor), done impressive stretches, can easily bend to press the flat of my hands to the floor, etc. However, the dx of BJHD was ridiculous - it was used to explain why I was achy, exhausted, and generally rheumatological symptom-y with no measurable bloodwork. Oh, so you're flexible? = BJHD.

I was seriously disappointed and ticked at the dx, which I thought of as a throwaway dx. Then, I did more research and thought that, even if they were incorrect, it's actually a pretty darned good guess. Look at all of the overlap between EDS and ME...

-J

 

[NilaJones]

Nope - so far as I know, no one in my family is flexible like I am. I have always sat Indian-style (with both knees nearly touching the floor), done impressive stretches, can easily bend to press the flat of my hands to the floor, etc. However, the dx of BJHD was ridiculous - it was used to explain why I was achy, exhausted, and generally rheumatological symptom-y with no measurable bloodwork. Oh, so you're flexible? = BJHD.

I was seriously disappointed and ticked at the dx, which I thought of as a throwaway dx. Then, I did more research and thought that, even if they were incorrect, it's actually a pretty darned good guess. Look at all of the overlap between EDS and ME...

-J

It was actually an impressive diagnosis. In the US, most docs have never heard of EDS, and most people who do get diagnosed have to spend 30 years or more going to doctors before they finally get the dx. No, this is not an exaggeration.

One big problem is that, yes, EDS-3 was formerly thought to be benign. New research shows that it often involves high degrees of fatigue, pain, and disability, but, again, most docs don't know about recent research.