I have Hypermobile Ehlers Danlos Syndrome and many comorbidities associated with hEDS. I was diagnosed in 2018 at the age of 19. I had two reconstructive joint surgeries by this point and still had multiple symptoms that could not be diagnosed as one thing.
I grew up with someone with hEDS and I talked with her about all my symptoms, and she told me to look into hEDS. I went through multiple doctors, ranging from neurology, rheumatology, gastroenterology, and orthopedics.
They all shifted my concerns to the next doctor and did not help with diagnosing anything. Finally reached out to the orthopedic surgeon that did my knee reconstruction and he agreed that all my symptoms and history lined up with EDS. He directed me to genetics and through there we ruled out the other subtypes and the genetics team agreed that my history and symptoms all line up with hEDS. That took 4 years! Four years of being shifted around and misunderstood and gaslighted by doctors.
My major complications due to hEDS is Gastrointestinal issues, I went through 4 different GI specialists in South Carolina until I actually received help. I was eventually diagnosed with Gastroparesis and Dumping Syndrome, as well as multiple enzyme deficiency disorders. Multiple treatments I have failed and my doctor still continues to research EDS, Gastrointestinal disorders and treatments for me and his other EDS patients. I also have POTS which is another comorbidity of hEDS.
I went through four cardiologists in the Lowcountry and still did not receive an official diagnosis. Just a notation in my chart that they believe I have POTS, no actual diagnosis, no call to let me know, no treatment options. I learned this by reading my chart online! I ended up researching and learning what could help ease my symptoms.
I struggle everyday with chronic pain and chronic gastrointestinal issues. I use AFOs and braces to keep my multiple joints from dislocating frequently. I go to physical therapy once a week to learn how to keep things from dislocating and to learn how to walk properly with and without my AFOS. I am still trying my best to live not just exist. I am in school to be a MLT.
I am a phlebotomist and worked in that field for a year before deciding to continue my education. This comes with difficulty as well. I enjoy being a part of EDS support groups as it makes me feel a part of a community.