The story of Teresa
My name is Teresa. My journey to diagnosis was long. Too long. I couldn’t do everyday life. I had worked as a nurse, but the shifts became impossible. When I asked for help, I was a zebra in a room where people could only see the horses. After diagnosis, my life became about managing symptoms and trying to maintain my level of health. Unfortunately, the EDS and the POTS progressed. Letting go of my work as a nurse was hard. I felt I had no purpose. I felt alone. But I learned that I wasn’t. The support of the EDS community and my friends became essential. Community told me that I am not alone. With their help, every time things seemed impossible and things fell apart, I struggled and then I kept getting back up. I survived a stroke and my health progressively still got worse. But I got up. I had been an elite athlete when I was younger, but my body no longer listened to me. I needed answers as things got even more complicated. And then, completely unexpectedly, I was also diagnosed with Addison’s. Being medically complex made finding a health care team that understood difficult. Thankfully, I had friends that didn’t give up on me and believed in me when I didn’t. In the end, the diagnoses were rough to hear but having the diagnoses finally helped my team target my treatment better. Those answers got me through surgeries and infections that might otherwise have proven to be fatal. With awareness came a new path forward. A different path. Now, I work hard to volunteer to help build accessibility and do what I can to work towards health equity. We need more awareness and more research funding. We need to find a way to support those within the rare disease community. With community, instead of being a zebra in a room full of horses, I was now a zebra in a dazzle of zebras. We may have rare diseases, but together we are strong. Together, we dazzle.