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Undifferentiated Connective Tissue Disease

Autoimmune Diseases | Last Active: May 9, 2023 | Replies (75)

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@terrirussell

Hi…..reading through all of these I thought I would give you something else to consider……just what you want right?? !!! ……anyway…..so much of what you convey is my life with Ehlers-Danos Syndrome …..which is a connective tissue disorder of basically inferior collagen…..which is of course everywhere!!! Everywhere !!! In the body…….some are affected so badly internally and some with all of their joints and some both!……skin, internal organs, joints…..you name it. That would be me. There are actually 13 types but the most common that I also have, is hypermobility type. I am full of titanium fixing and replacing joints, as well as having a lot of poorly perfecting internal systems repaired or removed due to connective tissue issues. I recently read on my EDS site that there are people being diagnosed with what you have when perhaps they actually may have EDS. EDS community went through this over 10 years , 1995-2005, of trying to address the many different kinds and categorizing them. It is just recently that you tell a doctor and they don’t look at you blankly. The younger doctors are getting in in med school…..finally. If you want a scale to use look up the signs for it and also do the Brighton Scale as that is very good but only really about the Hypermobility one. I am also 72 and have had all the very loose skin, that often comes w this, removed!….Best gift my hubby ever gave me!…..I am dealing w a lot but I look good! Lol! Take good care!……there is an army of information on this now! Terri

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Replies to "Hi…..reading through all of these I thought I would give you something else to consider……just what..."

Ha! I would happily give you 50% of my joint tightness in trade for your joint hyper mobility if that was possible!

I did look into EDS and it really does not fit my pattern of symptoms, but I appreciate the thought to keep my mind open!