I’m raising awareness for EDS with a reporter in my area, to help others on their diagnosis journey

Posted March 26, 2020

I had spent most of my life so far being very active. I lived to help others. I cared for the elderly, children and disabled. I taught gymnastics for 20 years. Now the tables are turned. It’s me who needs the care and I struggle with this new role. 

It feels foreign to me, this body seems not my own. I always knew I was different. I had super flexible joints. We went to a small-town school in rural Pennsylvania and even with the small number of kids in the school, I still knew 2 that could do the “tricks” that I could with my body. I remember sleeping with my legs twisted like a pretzel to relieve the pain in my lower back, and this was very young. 

I couldn’t go shopping with my mom because of the pain in my swayed back and legs. My family was a “be tough, we don’t go to the doctor” type. I tore my ACL in half and my mother made me wait until the morning to see a doctor. I hiked 90 miles with an 80lb backpack on my 120lb body, and I had 3 meniscus tears and degenerative disk disease while doing it that I didn’t know about. 

I’ve always had a high tolerance to pain so things went so overlooked for so long that I destroyed my body. I had no idea I had EDS. Now I’ve developed so many conditions that go along with it. I’m housebound and bed-bound a lot. 

My daughter and granddaughter are showing all the signs that did. Not quite severe as mine as I didn’t allow my daughter to participate in gymnastics because before I knew about hEDS I thought my pain and damage was from sports only. I still can’t seem to find any help for my disabilities now. They say I’m too young. I’m very lucky to have a supportive husband. If not for him I don’t think I would be alive. 

I felt like a huge burden to my family, but he made me see that I contribute now in different ways. I still struggle with massive guilt. But I’m learning to cope and to power through the bad days and look forward to the good ones. I have to focus on what I can do and not what I can’t.

My goal now is to help others any way that I can, with this new strange body and mind while caring for myself for once too. I have reached out to a young lady that I taught in gymnastics, who is a local TV reporter. 

She is going to do a story on EDS in May to raise awareness in my area where they know very little about EDS. I just have to get through a few surgeries first. I hope I can find some help and I pray that I will have the strength and courage to go on TV. I’m terrified as I’m a very private person. 

But I’m going to do it for all those silent sufferers like I was and all of the kids, like many I saw in my classes who have gone undiagnosed for way too long due to no information in my area.

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