Wishing Upon a Star for Ehlers-Danlos Patients

As many of you know, for the last few years I have tried to run to raise funds for worthy causes. This year that cause is very personal to me and my family.

In 2021, our daughter Aedan was diagnosed with Ehlers-Danlos Syndrome (EDS). The diagnosis finally put a name on a collection of issues, seemingly unrelated, that she had been suffering with for years, but could never be explained and were essentially dismissed by the doctors. So what is EDS? It’s actually a group of 13 related disorders caused by different genetic defects in collagen, an essential building block. EDS weakens the body’s connective tissues — which normally provide strength and flexibility — either because the collagen isn’t as strong as it should be or there’s not enough of it in the skin, muscles, skeleton and blood vessels. For those like my daughter, that results in loose joints throughout her body that can make something as simple as holding a pen or walking difficult and results in chronic pain making even attending a full day of school in person a non-starter right now. To complicate matters, for most EDS patients, including Aedan, EDS is accompanied by other conditions including POTS (heart issue) and Mast Cell Activation Syndrome (where the body essentially attacks itself) amongst others. Right now there is no cure for EDS. The best that can be done is to manage the symptoms and pain.

Relatively speaking, we are still in the early days of EDS research and the education of doctors and other service providers who treat EDS patients. Finding specialists who understand EDS (or even know what it is) is one of the biggest challenges we and other EDS patients face right now. A few places, like the Mayo Clinic and Tulane Medical School, have started specialty clinics for EDS, but appointments are quite literally years (not days or even months) out and day-to-day resources for EDS patients are difficult to find. EDS patients rely on social media and other word of mouth from other families to help point others to doctors in their region of the country who might be able to help.

So much more is needed to understand this disease and potentially someday find a cure. To help with that, this year I am running the Goofy Challenge (full marathon + half marathon or 39.3 miles) again to raise money for the Ehlers-Danlos Society. This is a direct fundraiser by me with 100% of your donations going to the Ehlers-Danlos Society (I pay for all of the costs associated with registration, travel, etc.).

The Ehlers-Danlos Society is a global community of patients, caregivers, healthcare professionals & supporters dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders & related conditions. They support collaborative research & education initiatives, awareness campaigns, advocacy, community-building & care for the EDS & HSD population. Their goals are world-wide awareness & a better quality of life for all who suffer from these conditions. For more information about EDS and the Ehlers-Danlos Society, please visit www.ehlers-danlos.com

On behalf of myself, Aedan, the rest of my family and all EDS patients, thank you for considering a donation to this worthy cause.