My HSD journey is not like many others due to my early diagnosis. I was diagnosed with a Generalized Connective Tissue Disorder-Hypermobility Type which was later renamed to Generalized Hypermobility Spectrum Disorder or G-HSD as a three year old. This early diagnosis positively affected my life and led to control over my symptoms. I am sharing my journey so medical professionals can understand the necessity of being educated about EDS/HSD and others can see that everyone experiences their own journey and deserves support no matter what.
My diagnosis journey started at birth when I was born 4 weeks premature. At the age of one I was not hitting basic milestones such as standing and crawling. My parents were concerned and took me to the doctor where they suspected gross motor delays and hypotonia. I got a script for physical therapy and learned to stand, crawl, and walk. During this time the physical therapist thought that something was irregular and we were sent to an orthopedic doctor. We found out that I had hip dysplasia on the left side, which is a partial dislocation of the hip, and I was put in a pavlik harness for a few months. After checking back with the doctor my parents were glad to find out that the pavlik harness worked and my hip was back in place. I went back to PT at around age 3 and continued to work on basic milestones. This is when my parents got another surprise, the physical therapist said that there is something else abnormal and they need to take me to a geneticist. The geneticist evaluated me and came to the diagnosis of a Generalized Connective Tissue Disorder-Hypermobility Type. Along with this diagnosis came recommendations for physical therapy and swimming lessons but also, warnings for the risk of contact sports on my joints. After this I resumed PT, used SMOs, worked on gross and fine motor skills, and continued to swim which was a safe sport for my body.
Fourteen years after my diagnosis I have learned to take care of my body. My early HSD diagnosis has allowed me to competitively swim and keep my symptoms under control. I learned about The Ehlers-Danlos Society after my older sister was diagnosed with EDS. I joined the Teen Council this year and I have learned so much. I have held fundraisers, learned more about EDS and HSD, and raised over $3,600. I have become much more confident in advocating and raising awareness. I continue physical therapy to strengthen my body in order to prevent injuries, subluxations, and dislocations. I want to share my journey to bring light to how much early diagnosis can change the path of a person with EDS or HSD. Without my early diagnosis I have no idea if I would still be swimming today. I hope that my journey helps medical professionals such as geneticists, physical therapists, and many others understand that knowing the signs and symptoms of EDS and HSD can change the course of a child’s life.
