Ehlers Danlos Syndrome Awareness Month

May is Ehlers Danlos Syndrome Awareness Month. I did not know that I had a genetic disorder and had passed it onto my kids until my daughter Selah was diagnosed with EDS. As the doctor conducted the tests on Selah, I was thinking to myself that my body moved the same way as her body did. The doctor turned to me and asked what parent had EDS. I flashed him what I now know is the gang sign for EDS and told him that I think it might be me. He looked at thumb resting easily on my forearm and nodded knowingly. (See image D below.)

This is one test that we didn’t want to score high on, but seem to be overachievers. I just always assumed everyone lived in pain. I figured that if people tried they also could put their foot over their head and rest their heel on the back of their neck with ease. Scar tissue has changed my flexility, but not the micro and macro injuries that happen from seemingly nothing.

Selah has the worst case of EDS out of all of us. Her bendy self breaks, dislocates, tears, and overreacts to everything. She is sharing her story on Instagram and Facebook if you’d like to show her some support as she builds her platform to launch her very unique wellness business while she works through certifications that she needs.

I also wanted to share a few resources for those living with EDS and HSD. I believe knowledge is power.