I am a physical therapist in the Boston Metrowest area with an interest in dance medicine and hypermobility-related conditions, particularly hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). I am a member of the American Physical Therapy Association, the International Association for Dance Medicine and Science, and am board-certified in orthopaedics.

Over the past several years, I have come to appreciate the multi-system effects of hypermobility-related conditions. More recently, engaging in social media and participating in the EDS ECHO program helped me to see the incredible variety of issues, as well as the common themes, associated with hEDS/HDS. 

There are many challenges faced by "zebras", as many in the hEDS/HSD community call themselves. Medicine is regional and expertise is not always accessible locally. Bias in healthcare is a problem. Coordination between healthcare providers can be challenging. Individuals who "look like they're fine" carry the extra burden of self-advocacy, not only to providers, but to friends and family as well.

Despite these challenges, there is hope.  Awareness and research are growing in medicine. Communities of support are developing.  The work is happening to better understand these conditions and to find effective treatments.

Please continue to share your stories. If it weren't for the experiences that my patients so graciously shared with me, I would not be pursuing answers to these questions.