Annaliese Posted March 13, 2012 Report Share Posted March 13, 2012 Anecdotally, there seems to be a link between ehlers danlos and autoimmunity and im wondering, as have others on here, whether EDS carries with it innate immune dysfunction (and hence a higher risk of AI disease). Im trying to find peer-reviewed articles or books/ websites on the topic but am not having that much luck. Ive seen it reported that people with EDS can have problems scarring ( scarring is part of immune function) and have a higher incidence of respiratory tract infections but that's about all. Has anybody seen any good refs of this topic? Ive also noticed women with EDS often have estrogen- related conditions. Again, i cant really find much on this....have you seen anything? Since women are much more likely to get AI disease, i think the high incidence of estrogen - related conditions among the EDS population is particularly interesting.... Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2012 Report Share Posted March 13, 2012 I know a bunch of us women with EDS have or had endometrosis. I also found some articles a while back and posted them on a connection with autoimmune antibodies to angiotension - the studies were done on people with scleraderma. But, it makes me wonder since there are collagen deficiencies could there be a connection with us with EDS. I haven't pursued this yet - as I'm trialing some natural supplements right this second. But, it recommeded ACE inhibitors for those with the problem. It also said that if that is the case - one wouldn't want to raise their potassium levels. An ARB does that. I also have autoimmune issues, I have vitiligo and alopecia and low IGG levels. So, somethings not right there. I don't scar bad however - but, they say I have EDS 3 not the classical form that would scar bad. I've had lots of surgeries and my scars all healed nicely. Thank goodness.Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 13, 2012 Author Report Share Posted March 13, 2012 Issie, did the people with scleroderma have EDS? Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2012 Report Share Posted March 13, 2012 No, scleraderma is where the collagen hardens - just the opposite of us with EDS. But, its still a collagen defect. So, just wondering if it could be the same type of issue with us. Didn't find anything else on it. But, with so many of us having autoimmune issues - makes you wonder.Issie Quote Link to comment Share on other sites More sharing options...
roxie Posted March 13, 2012 Report Share Posted March 13, 2012 I have had a high ANA since I got sick Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted March 13, 2012 Report Share Posted March 13, 2012 My ANA is always normal (whenever it's been checked). Laryngologist who scoped me this winter added dx of Sjogren's (added a Rx) which seemed feasible--said throat was really, really dry. Just had started treatment in fall for corneal abrasion/dry eyes and had dryness elsewhere. I, too, had endometriosis. I have CVID, selective IgA deficiency and fail the pneumonia vaccine challenge. I am EDS III but also have the Delta Granule Storage Pool Deficiency. I am sorry not to be familiar with publications. I just try to roll with the flow and am happy that my PCP has not dumped me (being her first Zebra in all her years of practice). My cardiac specialist in dysautonomia explained to me whereas before I had POTS, when I saw him many months later, I had orthostatic hypotension and my ANS was failing. I would have fewer warnings of faint and could anticipate down the road needing a pacemaker. My BP has been doing pretty good--until Sunday when that sunshine dared me to go out and cut off the dead stuff from my fall flowers/plants. It called for a lot of squatting and stooping (and I tried to reach above my head to get shovel out of loft). Then I started staggering around the yard to get to a chair for things to pass. What I know--I get transfused with gamma globulin, I still suffer from the sinus/respiratory/stomach stuff that IgG doesn't defend, I get platelets before procedures, I don't get procedures unless last resort, and then do not get rattled with post op complications that can come with EDS) and all the other things we are taught/learn that comes with the dysautonomia. As bad as my pains are from EDS and fibro, they are trivial compared to all this other stuff that pushes me down. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted March 31, 2012 Author Report Share Posted March 31, 2012 http://www.ednf.org/index.php?option=com_content&task=view&id=1490&Itemid=88888988 Quote Link to comment Share on other sites More sharing options...
kjmom Posted March 31, 2012 Report Share Posted March 31, 2012 My DD (who just got diagnosed with dystautonomia) had a positive ANA and Sjorgren's, but the docs said they were false positive. She is hyper flexible in her small joints and incredibly soft skin, which her doc said was common in this condition. Quote Link to comment Share on other sites More sharing options...
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