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Do You Have PH and Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome, from what I read, is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls.
We have a new member to our forums who is battling both PH and Ehlers-Danlos syndrome. Do you have PH and Ehlers-Danlos Syndrome too? It helps when we can share similar experiences. Tell us about your battle with both conditions and how you manage them together.
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7 Replies
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Yes, great question, @colleensteele. I have yet to hear from anyone who has PH and EDS. But, we do have a few columnists who write for EDS and a website at BioNews. I am sharing that link here so maybe others can learn from the information there, too.
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Oh, good catch @jenc! You just inspired a new topic about forums for co-existing rare disease.
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Yes, I love that you created a new topic. I have now heard of a few members here who may benefit from other communities, too. Not all have forums, but columns and information that may be helpful.
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Colleen I’m Sheryll Hall Don’t know how to get on to PH it they send me emails!(I’m not on Facebook) yes I have Ehlers Danlos type 3 very loose joints and I as of Jan 2020 have all 4 heart valves leaking,all mild except mitral which is moderate.Echo also showed mild pulmonary hypertension. My heart dr.says nothing to worry about! His going to do another Echo in Jan. Forgive my typing.
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Thanks, Jen, for putting this in—I think it might be because of my post.——It is so nice to know people care.
Jerri -
I have PH, hEDS, asthma, Raynauds, hypothyroidism, lymphedema, many allergies, psoriasis, and I likely left something out. I am happy to be here, although I wish I had no reason to be.
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@ram27 I wish none of us had a reason to be here but we are and it’s a great group of people here. I think you will be happy with the compassion and information shared on a daily basis.
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