December 6th, 2020, was a day that changed my life forever. I was diagnosed with a sinus infection and was treated with amoxicillin. After ten days, I developed severe hives and swelling of my joints and was unable to walk. I went to the ER where I was diagnosed with serum-like sickness, put on steroids, and discharged.
After this reaction, I never fully healed, and the next two years were full of doctors appointments, trying to figure out what was wrong with me. I easily saw over twenty doctors, none of them with a diagnosis for me, several failed medications, misdiagnoses, and gaslighting and mistreatment. Through this process, I was battling a year-long migraine, pain to the point where even writing and drawing were too painful, and dizziness/presyncope.
It wasn’t until November of 2022 when we met the most amazing doctor who was able to diagnose me with hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). I was finally understood and was able to start getting treatment. My mom was by my side through the hardest two years of my life, sleepless nights googling my symptoms, fighting with insurance to cover medications, and holding my hand through the hard days, and I will be forever grateful for her.
Unfortunately my journey didn’t stop there. It was in the next few months when my neck instability, joints, and gastrointestinal symptoms would decline. My hips would slip out of place while walking, I had to quit all the sports I loved, was barely able to make it through a school day, and missed out on so many events due to my symptoms. I was diagnosed with gastroperesis which is partial paralysis of the stomach earlier this year after extensive testing, and currently have a central line for fluids as I am not able to sustain the amount of fluids I need with my gastrointestinal dysfunction and POTS.
However, through it all I have looked up to so many others battling the same conditions, which is truly what is getting me through. I started an organization called Stripes in Stride in the midst of this, to advocate and educate the community on EDS, specifically in pediatric patients. I also joined The Ehlers-Danlos Society Teen Council earlier this year, and have raised over $3,200 for the Society’s mission, with the help of family, friends, and anonymous donors whom I am so grateful for!
Beginning my advocacy journey has given me the power to have a sense of control, and begin to make change in the community that affects me, and so many people I love and care about. Thank you for reading my story, and supporting The Ehlers-Danlos Society!
