Growing up, I loved being in a pool. I started synchronized swimming at a young age and always felt graceful in the water. By middle school, I had become a competitive swimmer and was particularly good at the butterfly, thanks in part to my unusually flexible shoulders, which gave me a greater range of motion and speed. On land, my hyperflexible joints often led to dislocated ankles, elbows, and ribs. As I got older, my joints were often sore and painful, which I attributed to overtraining. For a while, physical therapy helped to manage the pain and discomfort.
Eventually, though, the pain got to be too much, and I stopped swimming after my freshman year. Then, toward the end of my senior year, I experienced minor whiplash. I was driving about 5 miles per hour in heavy, stop-and-go traffic near college when I slammed on the brakes to avoid a fender bender. The whiplash caused an instant headache. I called my parents crying as the headache got worse and I became dizzy and nauseous. After a painful drive back to the dormitory, I collapsed into bed.
My mom flew out to take me to doctor's visits and help me with my classes. When it became clear that the doctors couldn't help me and I wasn't going to be able to handle my classwork, I left school eight weeks before graduation.
Sinking Fast
At home, my condition deteriorated. My appetite disappeared from the nausea, and I lost more than 50 pounds in a few months. I developed dysautonomia [dysfunction of the autonomic nervous system], nerve pain, and muscle spasms in my neck. My skin was also extremely sensitive, and the slightest touch caused me pain. I avoided showers and clothing that irritated my skin. I became very sensitive to light and noise and was bedridden most of the time from headaches and sharp, intermittent pain throughout my body.
Finding Relief
I went to several specialists who prescribed different therapies to manage the pain, but nothing seemed to help.
One neurologist treated me with migraine medication. When that didn't work, he referred me to a rheumatologist, who finally diagnosed me with Ehlers-Danlos syndrome (EDS), a group of heritable connective tissue disorders characterized by joint hypermobility and also associated with musculoskeletal pain, fatigue, headache, and muscle weakness.
Help on the Way
It was such a relief to have an explanation for my flexible joints and frequent dislocations. EDS causes instability in all of the joints and, in my case, instability of the craniocervical junction between the skull and the spine. [Craniocervical instability is thought to contribute to autonomic symptoms such as dizziness, loss of appetite, and sensitivity to light, according to Dysautonomia International.] Once we had the diagnosis, my mom and I connected with EDS support groups, which is how we learned about craniocervical fusion, a surgical procedure that fuses the spine to the skull with titanium and bone material.
After consulting with a surgeon in New York who said the procedure would help stabilize my craniocervical junction and relieve pressure on my brainstem, we decided to move ahead with the operation. Within a few days of surgery, my symptoms noticeably improved.
Splashing Again
It's been two years since the operation, and my life has changed significantly. I will always live with some level of pain from EDS and have good and bad days, but I'm now thinking about going back to school for an advanced degree in genetics, largely because of my experience with EDS.
Even more exciting, I'm back in the pool. I'm coaching a local swim team of boys and girls ages 5 to 12. During those months when I was bedridden with pain, I never thought I would be able to swim again. I'm happy to have been proved wrong.