Diagnosis: Ehlers-Danlos Syndrome & Postural Orthostatic Tachycardia Syndrome

[@delphinewood7519]

Wow! What an authentic video! And -me too on all of that. Thank you. Keep going! 🙏🌵💙

[@sherryobar5750]

Hang in there, we hear you, those of us who have walked in your shoes! Thank you for sharing your experience :)

[@shannongreenwell1278]

I have EDS, and I was very bendy when I was a child and teenager compared to now! EDS hurts like heck and I would tell anyone! I’m being tested for POTS, Thanks to EDS for that. I also have Epilepsy which causes me to have seizures.

[@kaymack5304]

Great video…love your sense of humor. We are on the road for a diagnosis for my teen and I’ve been diagnosed with fibromyalgia but the more I learn about EDS the more I think that I’ve been misdiagnosed. The hardest part is finding a doctor to take you seriously and who knows about EDS. I live in Massachusetts too and was wondering if you have a doctor you would recommend? Hope that’s not too creepy to ask, but I need to help my child get diagnosed at least.😅

[@POTSZebra]

Not creepy at all! The geneticist who diagnosed me is Dr. Jeff Millensky and he is in Cambridge, MA at Center for Human Genetics, Inc. Riverside Technology Center 840 Memorial Drive, Suite 101 Phone: [phone]

[@kaymack5304]

@@POTSZebra thank you so much!

[@MrsDalamon]

It is hard, and like you are being on "the struggle bus" I am too ...Diagnosed at the age of 43... Would be nice to get off that bus. Thank you for getting the message out there, you rock! :)

[@bonnierobinson8684]

I have something happening to my heart.