Just found your podcast.

Thank you so much for creating this information podcast for EDS. I have notice a few podcast stop after only 1 episode. Clinics around me have stopped their EDS clinics. My rheumatologist told me I “most likely” have it. My daughter and grandson were diagnosed a year ago. I did my research and can definitely see it in my family line. My daughter has Arnold Chiari Malformation, my grandmother had a hunch back and clubfoot. Nephews who are tall and skinny with long fingers. Brother who was able to stretch his eyelids, as children we competed on bending our fingers to our wrists, sitting with our joints in positions that look very uncomfortable to other people. I’m 54 now and am not as hyper mobile as I was in my younger years, but notice a lot of bruising, the scar tissue build up, thin skin, joints dislocating often. My pinky finger keeps dislocation while I’m typing this. I am more concerned now because I have the inappropriate tachycardia and know that my body is being flooded with cortisol. I have tendinitis in my elbow. Diagnosed with both tennis and golfer elbows. Just so much going on with my body and there are no drs around that want anything to do with it. I have been told by Pain Management that the focus to treat it is just to protect the joints and lots of physical therapy. My rheumatologist told me to get a diagnosis I need to see a geneticist. All the big hospitals around UTMB and Baylor have ended their clinics. I worked for orthopedics who say they will not manage it anymore. I’m confused on how it’s barely becoming known but at the same time medical professionals don’t want to treat it. We need more awareness and a good treatment plan. I would like to a standard diagnostic criteria, please keep your program going. The people who are finally starting to connect the dots and look into this as a cause of their symptoms and have no one around to support them and help them get answers NEED THIS PODCAST. We need answers. We need information. We need our voices heard. Thank you.