We are accepting the Ehler-Danlos Society's Awareness Adventure Challenge!

I'm Eric Hoffman. Sarah Sullivan and I have teamed up for The Ehlers-Danlos Society’s Awareness Adventure Challenge to e-cycle through Cambodia and Vietnam in February 2020. Please support us by donating to our fundraising page. After we reach our fundraising goal, we'll be able to spend time with the Society's Lead Scientific Officer and her colleagues while we ride through Cambodia and Vietnam and learn more about EDS, ongoing research, and progress to serve the worldwide population of people with EDS.

What is Ehlers-Danlos? It's the kind of name that happens when two scientists work together on the same thing. Oh, sorry. The great folks at the Society wanted me to tell you that Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders, that can affect multiple systems of the body. Hypermobility spectrum disorders (HSD) are a group of conditions related to joint hypermobility. HSD, just like EDS, can have significant effects on our health.

Remember that double-jointed kid you grew up with? I was that kid. That's often the first cue others see in a person with EDS or HSD. But I also have stretchy skin that heals slower than usual. And joint pains--some chronic, some seemingly random. And there's more to connective tissue than structural issues--you also need healthy connective tissues in your heart and other organs. I've had surgery to repair both my heart and digestive system.

But overall, I'm very lucky. Other than a few hospital stays (both scheduled and impromptu), and cussing at my joints every so often, I don't have as much trouble with mobility, pain, and daily life as others with EDS. But each case is unique, and severity may range dramatically, even within families. For example, my daughter also has EDS, as does her mother, but her EDS is different than mine. She clearly has the Hypermobile type like her mother, but I likely have Classical EDS.

Because I don't know what the future holds for me and my family, as I'm seeing an increase in symptoms as I age, this is personal for me. So Sarah & I are taking this challenge & riding together.

And now, a message from our sponsor: The Ehlers-Danlos Society is a global community dedicated to saving, and improving the lives of, those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. Our goal is world-wide awareness, and better quality of life for all who suffer from these conditions, regardless of geography.

Please support us as we overcome our family's challenges with EDS by exploring Cambodia and Vietnam on The Ehlers-Danlos Society’s Awareness Adventure Challenge.

Cover photo by Pro2 - Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=53...