Ehlers-Danlos Syndrome and HEDS of Berkshire County Massachusetts

04/07/2023

https://www.facebook.com/100005923981383/posts/2104115659795880/?mibextid=q5o4bk

03/14/2023

02/19/2023

No joke! But it’s funny 😄

02/19/2023

So true! I usually have mine going all winter!

Cool Mist Humidifier, Ultrasonic Humidifiers for Bedroom Baby, 3L Large Humidifier w/ Remote Control, 7 Colors Night Light 6 Dimmer Adjustable Mist Levels, Timer, Auto Shut-Off for Large Room, Black

02/10/2023

Such a warrior!

When people find out that I have EDS (ehlers-danlos syndrome, a degenerative condition that affects my connective tissue and results in damaged joints and chronic pain and inflammation), the first question they almost always ask is, "but how do you skate???"

I wear this headband when I skate for a reason. "Everything hurts." If you have chronic pain, you know how real this is. Standing hurts, sitting hurts, laying down hurts. Even at my absolute coziest and comfiest I am in pain. I spent most of my 20s feeling miserable and sorry for myself, terrified that I'd never be pain free again.

And... well, I'm not pain free, and there are still days when I am consumed by grief for the body I do not have, full of dread of the knowledgeable that my body that will some day steal skating from me, as it has stolen so much else.

But as long as I must be in pain, skating makes me feel alive, and, for a magical hour or two, my body becomes lighter than air and I can float along the seaside like a bird coasting on thermals.

-Eddie

02/08/2023

I think Michael Jackson had it too! So many EDS patients have heart and valve issues and extreme pain that is difficult to manage. 😢

By Donna Gregory Burch When Elvis Presley first hit the music scene during the 1950s, he was both beloved and vilified for the hip-thrusting, leg-shaking and gyrating that changed the art form of musical performance forever.

02/08/2023

Sometimes you just have to laugh a little or you won’t make it! 😂