I didn’t want to be treated differently

Posted January 6, 2020

I’m Evy and this is my EDS story.

I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but I was finally diagnosed by a geneticist who believed I inherited it from my mom who also has a form of hEDS.

Since I was 9, I’ve had symptoms of tremors, heart palpitations, nausea, fatigue, and syncope, but it was always dismissed by doctors as low blood sugar. Growing up, I loved playing sports despite my loose, painful joints and easy bruising. When I was in middle school, my doctors advised me not to continue playing basketball to prevent injuries and to help my “low blood sugar” symptoms. I knew I had some health issues, but back then I wasn’t aware of all the side effects of EDS, so I just thought everyone had similar pain and had to deal with it. The thought of quitting basketball was devastating. For a long time I was in denial that I had EDS because I did not want to believe that I was any different than other kids my age, and I did not experience some of the symptoms that I now have. My mom would make me tell my coaches so that they knew about my pain. I would get so angry with her because I didn’t want my coaches to treat me any differently than my teammates. Also, they truly did not understand what EDS is. I would say “Mom, it’s not even a real thing.”

My passion for basketball and my stubbornness to prove that I could play at a varsity level helped me survive 4 years of high school basketball. I suffered multiple sprains, severe bruising, hip and knee impingement, foot surgery, and a fractured thumb. I looked pretty silly wearing several support braces out there on the court, but I was not going to let EDS stop me from doing something that I love.

Now I’m 19 and a junior in college. Since I’ve stopped playing sports, my joint pain and “low blood sugar” (PoTS) symptoms have gotten worse. This past year I have had many digestive issues along with being diagnosed with PoTS, aortic root dilation, and mitral valve prolapse. This past year challenged me in so many ways, but I am grateful for the personal growth that came from it.

This year I’ve experienced extreme fatigue, fainting spells, nausea, vomiting, and ongoing joint pain in my back, neck, and knees. I’ve seen many different specialists and I’m currently trying out different medications to improve my symptoms. Looking back, this past year forced me to accept the fact that EDS is a “real” condition that needs to be brought to others’ attention. I realize I need to take care of myself and know that there will be good days and bad days, but at the same time, not give up on my dreams and plans. All I can do is try to treat my symptoms, have an optimistic attitude, do my best to live as normally as possible, and trust God’s plans for my life.

I want others to know that EDS shouldn’t stop you from pursuing your dreams, but our complaints are legitimate and need to be taken seriously. I am pursuing a degree in criminal justice and plan to graduate in December of 2020. I would like to find a career in some aspect of criminal justice, but I am also interested in becoming an ambassador/advocate for EDS awareness and research. I’ve seen other patient’s struggles with EDS through social media, and it is comforting to know that I am not alone. I hope that someone else can relate to my story and have that same feeling.

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