Hi Meryl - your rsearch powers are awesome - you are certainly keeping me on my otes and looking for clues. I was interested yesterday to read up more on connective tissue disorders, Marfans etc and links you posted. This is what jumps out at me from my family.
I was born with a patent Ductus arteriosis (not premature baby) which i had tied, in open heart surgery at 6 (quite old!) Back in thos edays there was no keyhole surgery, so it was yank the ribs apart, massive scar etc. I didnt know its common in some Connective tissue disorders (can we call them CTD so i dont have ot keep typing it?)
I have long slender fingers, and grew very quickly as a teen ager i was very tall, but didnt realise my potential and only made it to 5 ft 6 in (although i am taller than all preceding members of my family)
My son, who is not ill with M.E is VERY tall - 6 ft 4in at 21, very long arms and legs, very slim fingers. He has the concave sternum (very thin) also has many stretch marks all over body - especially down back , despite never having been overweight. He has often complianed of aches and pains and bone/muscle aches etc. He had oshgood schlatters as a teenager. He has week wrists, despite being so large - we used to try and get him to chop wood, but he ended up at the doctors with a very sprained wrist.
My daughter - she has been ill with a mystery debilitating illness, that mainly attacked her digestive system and tonsils - bed bound and lost over a year of school - 4 years on much better, but still has health issues. She has hypermobile joints, but is not talllike her brother.
I'm wondering if there is some way of being genetically tested as a family (or individually) to see if these disorders come up? I mean a definitive test, not just a possibility test.
Much to think about Meryl.
take care, Justyx