Hi there! I'm 28 years old and I have Ehlers-Danlos Syndrome and many "side effect" conditions associated with EDS. I am currently studying a Masters in Public Health and really keen to research chronic pain and learn more about conditions associated through my Masters and connections with health professionals. I am passionate about keeping my body as strong and healthy as possible to minimise the effects of my degenerative illness and to stay as active and mobile for as long as I can.
I enjoy talking to others and sharing experiences.
At 22 years old I had my gall bladder removed due to a large gall stone. After experiencing post operative complications, I started a downward decent in my health status. Over the course of 5 years it took many specialists and tests to diagnose obscure conditions that just didn't quite make sense how I could have all these separate issues without there being a connection somehow. I eventually put the puzzle together and self diagnosed EDS and then contacted a geneticist who suggested I make an appointment for a proper evaluation. My sister and I both attended and within 10 minutes we were confirmed as having Ehlers-Danlos Syndrome (Classical type). The difficulty with having an obscure rare genetic illness is explaining to doctors it's impacts on my health and for them to understand their role in assisting me maintain my health. I am fortunate to be under an amazing GP who is supportive, listens to me and just wants to improve my quality of life. He is proactive and has helped keep me active and positive about my future. While my condition is degenerative, I am still keen on making a difference myself in research or the medical profession in the near future. I enjoy talking to people with any condition regardless if I also have it or not - I enjoy mentoring and supporting others but also feel having a good range of support networks for myself is incredibly important in managing a chronic illness.
Dec 07, 2011
Dec 15, 2011