05/26/2025
Happy Ehlers-Danlos Syndrome Awareness Month— and now, officially, Ehlers-Danlos Syndrome Awareness Week in the City of Lakeland! 🦓💜
Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect the skin, joints, and blood vessels. People with EDS often have joints that are overly flexible, skin that is unusually stretchy, and tissue that is fragile and slow to heal. Because EDS impacts collagen production, a major building block of the body, it can lead to a wide range of complications that often go unseen and undiagnosed for years.
I personally live with Classical-Like Ehlers-Danlos Syndrome, a subtype that has significantly affected my life. When I was 12 years old, I underwent a femoral tibial bilateral osteotomy; a major surgery to correct the misalignment of my legs caused by a lack of connective tissue support. I was originally told it would take about three months to recover, but because of my EDS (which I didn’t even know I had at the time), the healing process stretched into more than a year. Aside from the healing problems I had with my wounds the part that proved most challenging was relearning how to walk.
Like many others with EDS, I didn’t receive a diagnosis until after my symptoms had already taken a toll on my body. In fact, the average age for an EDS diagnosis is in the mid-40s. This delay is part of why raising awareness is so critical; EDS is often unseen, underdiagnosed, and underfunded.
That’s why I’m proud to share that I helped make Ehlers-Danlos Syndrome Awareness Week an official proclamation in the city of Lakeland. It’s a step toward giving visibility to those of us living with EDS and helping others recognize the signs earlier. Awareness is the first step toward compassion, proper care, and better outcomes.
Let’s keep spreading the word for the zebras like me and so many others who deserve to be seen, heard, and supported.
I cannot wait to collect my formal proclamation from the city of Lakeland June 2nd!
