welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!
view full social & media section

Boston Area Ehlers Danlos Zebras, Dysautonomia, POTS, and vWD Friends


Hello Everyone! My name is Mary Beth, I live in the Boston area and I put this Group together for Boston Area People we call Zebras – who have EDS, and for some of us, this leads to a type of Dysautonomia called POTS – to help each other find Help. I started because I am in need of help with referrals and information. IF you have info, need info, or want to o learn about these disorders or similar ones, Thank you for being here and I hope you can help or that it helps. I have EDS ( Ehlers Danlos Syndrome) Types 1 and 2, I have Scoliosis, Dermataographism Am being tested for Dysautonmia ( probably POTS) soon, and I have won Willebrands type 1, a Bleeding disorder. Many of these things are related or cause the other ones….. I encourage you all to help or ask questions. Remember that no one here ( so far 🙂 is a Doctor, can replace your own medical Doctor’s advice, or knows your story, and what works for YOU. I am very aware we each have a story to tell and many needs and worries, and that we all are STRONG Zebras, Princess of the Pea, and Most see the TIp of our Iceberg. Be patient with yourself when you can…. and know that I am focused on me and what will help my journey, just as you all are. Don’t let the people who are cruel to you or think you are lazy get to you. Brush it off and come here for some humor. May 2014: I haven’t been as much around dealing with my own “spoon shortage” MANY HUGS. ~ MaryBeth

expertly curated content related to this topic