‘I went from being an average teenager to being stuck in bed close to 22 hours each day.’

Massapequa

“Ehlers-Danlos Syndrome (EDS) is a genetic condition which affects the collagen in your body. My joints are loose, and things pop out easily because of it. EDS is also the underlying cause of my other conditions.

“I have Postural Orthostatic Tachycardia Syndrome (POTS), which means that I have low blood pressure, my heart races, I have improper blood circulation, and it causes neurological symptoms. I was first diagnosed with EDS in the eighth grade when I had minor symptoms. I started a campaign in the ninth grade to raise awareness, and continued to do it for three years with the help of my friends. I’m really proud that I raised $4,500 for the EDS Foundation.

“Things got worse quickly in the 10th-grade. I found out that I had Tethered Cord Syndrome, which meant that my spinal cord didn’t allow proper movement. I went from being an average teenager to being stuck in bed close to 22 hours each day. That summer I had my first surgery to have my spinal cord de-tethered. I was mostly in bed in 11th-and 12th-grade because I had another surgery to relieve high brain pressure. I had no muscle control so I couldn’t support my weight. I wasn’t even able to hold my head up anymore. I had to use my few good hours in the day to get schoolwork done.

I want to do biomedical engineering and then go to law school to do disability rights law so that I can help people with rare and unusual conditions; after all, I spent so much time in high school advocating for myself.

“In November of my senior year I had a fusion, which was a really big surgery that helped significantly. The day I was finally able to go back to school, it closed because of Covid! I wasn’t willing to let being sick stop me from taking AP classes.

“I poured my little energy into college applications. I learned that I am a very driven and positive person. I focus on the small silver linings, such as my great dog, Fritz. If I needed help, he would alert my parents. Recently, I was excited to play piano again, and now I can learn how to drive. I’m going to the University of Virginia in the fall after deferring for one year. I want to do biomedical engineering and then go to law school to do disability rights law so that I can help people with rare and unusual conditions; after all, I spent so much time in high school advocating for myself, like having them install a handicapped door button. At this point though, I’m just looking forward to being pretty normal.”

Interviewed by Iris Wiener