By Maddie on Friday, June 02, 2000 - 12:45 pm:

I have a question for anyone out there with EDS. The rheumatologist that i saw said that i have HMS and not EDS because my skin was not exceptionally stretchy. I
was under the perception that NOT ALL forms of EDS have extremely stretchy skin. However, he didnt want to explore the idea of EDS at all. Does anyone out
there with EDS not have stretchy skin, or extremely stretchy skin? Thanks

By Ester on Friday, June 02, 2000 - 12:45 pm:

The reumatologist who examined me told me that you
needen't have a strechy skin, eye- or heartproblems
to get the diagnosis EDS. She refered me to
a 'connective tissue dissorder clinic' for further
examination and to get advice on how to handle the
hypermobility problems. There the internist told me that I
didn't have EDS because I have normal skin, eyes
and heart.

The reumatologist said: those things like stretchy
skin are just guidelines for us docters. The internist
said: that aren't guidelines, those are european rules.
I would like to put these 2 docters in 1 room for a
good converstation about this topic. Because they made
me quite confuced.

I think the problem is that docters use different standarts.


Ester.

By Sue C. on Friday, June 02, 2000 - 12:46 pm:

Doctors, if they have even heard of EDS, know it by the brief mention during medical school, rather than in-depth research.

Consider enlightening this person with info printed from the ednf.org site or publications.

By NB on Friday, June 02, 2000 - 12:46 pm:

SKIN strretchability can vary espec in hypermobile type EDS. i and my son don't have especially stretchy skin, but i and a sister do have dystrophic scarring, which
again is a variable symptom.

nb -hypermobile EDS

By jane grant on Sunday, October 01, 2000 - 06:43 am:

Does this mean stretchy on the inside as well? I have recently been diagnosed as HMS & have asked my doc about my stomach problems i.e. 2 hiatus hernias now, 1st one aged 12 & in between a twisted stomach which apparently is more common in dogs and nearly killed me!I have always had poor muscle tone around the stomach area & after 3 pregnancies & increased severity of HMS I feel as if my body is falling apart. I am a lone parent ,in UK & have been unable to work since I collapsed at work in February.Can anyone help? PLEASE. Jane

By Angie Mitchell on Saturday, March 27, 2004 - 05:28 am:

I don't have stretchy skin but my daughter does and we have both been diagnosed with classical EDS by an expert geneticist up in Glasgow.