Resilience and Determination: Our Family's Journey with Ehlers-Danlos Syndrome

May heralds Ehlers-Danlos Awareness Month, a crucial opportunity to raise awareness and understanding of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).?

As May arrives, it heralds Ehlers-Danlos Awareness Month - a crucial opportunity to raise visibility and understanding of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). This global initiative celebrates the vibrant community impacted by these conditions while advocating for increased research, support, and accessible healthcare. While our shared mission resonates throughout the year, this month unites us in a powerful voice, sharing experiences and driving progressive change.

For our family, Ehlers-Danlos has presented an ever-present challenge requiring tremendous resilience. I have paralysis in one leg, with hEDS (Hypermobile Ehlers-Danlos Syndrome), necessitating braces on both legs and a wheelchair during times of severe mobility issues. The combined effects of EDS and essential tremors transform each day into an exercise in perseverance. Yet I've refused to be defined by these obstacles, fighting to maintain an active life as a firefighter since 1997 and now serving as the Safety Officer for the Lawrenceburg Fire Department, all while serving as the Senior Resident Engineer for the Commonwealth of Kentucky in the Services Division at Extreme Networks and as the Chairman of the Board for Anderson County Schools.

My daughter battles an even more arduous journey with a severe form of hEDS, leaving her approximately 80% wheelchair-bound. In addition to frequent joint dislocations and severe gastrointestinal complications requiring numerous surgeries, she also suffers from postural orthostatic tachycardia syndrome (POTS) - a condition tied to her EDS that causes an abnormal increase in heart rate when standing up. This array of issues would test anyone's fortitude. However, her determination echoes my own as she overcomes challenge after challenge - completing her associate degree before finishing high school and now working towards her bachelor's. She even worked at Disney World as part of their Disney College Program as a Vacation Planner, where she collaborated with their abilities group to enhance accessibility for guests and cast members with disabilities across the parks and resorts.

Despite the obstacles Ehlers-Danlos presents, our family mantra remains: "Nothing Holds Us Back!" In addition to my professional roles, I now serve as the Chair of the Careers subcommittee for the Abilities Alliance at Extreme Networks. We hope our story inspires others in this remarkable community to pursue their dreams relentlessly. An EDS diagnosis necessitates a life of adaptation, but it need not constrain one's life. ?

During this Ehlers-Danlos Awareness Month, let's amplify our voices and share our stories far and wide. Let's celebrate our strengths, advocate for further research and support, and demonstrate endless perseverance in redefining what's possible with EDS and HSD. By raising awareness, we can foster understanding, validate the experiences of those impacted, and ultimately drive positive change for this underrepresented community.

You can learn more about?Ehlers-Danlos syndromes?by visiting these sites:?

https://www.ehlers-danlos.com/?

https://www.facebook.com/ehlers.danlos/