I would love to be around to see positive changes

Posted August 16, 2022

If I reduced my life’s narrative to two words, they would be “Overcoming Challenges.” In the psychic and physical realm, nothing came easy. I had to fight for what I have and to be who I am today, and for better or worse, and at the core of my story, EDS plays a significant role. Here is an excerpt:I was born in Rio de Janeiro, Brazil, in the late ’70s. A frail, underweight baby whose mouth was too weak for breastfeeding. As I grew up, I developed amblyopia in one eye and extreme joint hypermobility, which left the pediatrician intrigued. He examined me and told my mother I should join a circus: “She would be a fantastic attraction with this elasticity.” he said, laughing. I remember this upsetting my mother, who had little sense of humor.This doctor handled me like a lab experiment. He pulled, folded, and stretched my limbs as far as possible, then sent me home with orthopedic boots. My knees were crooked, and I had difficulty walking. As the years passed, more problems emerged: Brain fog, wounds that took long to heal, and left unsightly keloids. But the worst is that I lacked coordination, especially in my hands. All fingers failed at the joints, making it nearly impossible for me to play the piano—a massive frustration for a child with dreams of pursuing a life in music.Though I had this handicap, I continued to attempt to play the piano. I began hacking my playing by writing and re-writing music specifically for myself through aching discipline. In the future, I would play the instrument to some extent, though nothing close to what I envisioned. Unaware of what caused my troubles, I blamed my lousy playing on my lack of natural abilities. It wasn’t comfortable to see others who had less interest in music progress faster than me.Ten years later, in my early teens, I suffered a nasty joint dislocation on my left arm. During that period, I also lost weight and lost an unusual amount of muscle tone. A puzzled doctor analyzed my rubbery skin and noticed how unusually flexible I was. He left the office and returned a few moments later with a heavy book in his hands and said: “I think you have a condition called Ehlers-Danlos syndrome. It is a disorder that affects your connective tissues — mainly your skin, joints, and blood vessels. It might explain your symptoms, the overly flexible joints, and stretchy skin.” He continued: “EDS has no cure, and it’s progressive. There is nothing I can do for you, but you can try physical therapy. Also, consider lifting weights. Building muscle might help your body compensate for what it lacks.” “Great,” I thought and left the office in worse condition than I had arrived.In retrospect, it is a miracle this doctor could name such a rare condition in Brazil, of all places, during the early 90s. There was no proof or tests to validate his findings. Still, I took his advice and began a protocol. First, I had to accept my fragility, a vast frustrating part of this diagnosis. I wanted to learn martial arts, run, and do sports. I wanted to play the piano at the highest level instead of fitting music around my limitations. I blamed EDS for everything terrible that happened to me up to that point, and little did I know I was at the height of my most excellent health.EDS is not for the faint of heart. My skin is fragile; I run from the sun like a vampire and freak out about minor paper cuts. I learned to live with the constant aches and pains associated with the disease, and every year, something new shows up. It takes me a while to get going every morning because I need to get through the discomfort of feeling my body—every single bone in my body cracks and at the most embarrassing moments. To cope with this disease, I have to push through it. It can be tiring and lonely at times.EDS can be disguised, dismissed, or misdiagnosed. And I never desired to be open about it until now, probably because I was traumatized by frequently being mocked about my body when I was a child. Inside, I tried to hide my condition, and the ironic part of EDS is that you can. But it isn’t smart to stay silent. We need more awareness now than ever as medicine advances, especially in gene editing therapy. And this is why I am sharing my story.Finally, though I have many challenges with this condition, I am a healthy 44-year-old. I have a beautiful career in music and a lovely family. I treasure life more and more each day and have a deep appreciation for the little things. Living with EDS requires resilience, and not succumbing entirely to its powers can be exhausting. But I see hope on the horizon, and I would love to be around to see positive changes.

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