Hey I’m Sienna, I’m a premed student who hopes to become a pathologist and also would like to pursue my interests in connective tissue disorders. I was very recently diagnosed with hypermobile EDS (hEDS) at 19, after years of dealing with chronic pain.
As a child I would constantly sprain my ankles, entertain my friends by contorting my body, etc. At 13 I started developing joint pain, no doctors took me seriously and believed I was “too young” to be having issues like this and I would most likely grow out of it.
When I was 16 I finally thought I found a doctor who would help me, he ran me through many tests, nothing came back and told me I was a medical mystery. After that I never heard from him again and I once again felt defeated. I dismissed myself for a few years and avoided the doctor out of fear of being overlooked.
At 18 I started feeling weaker, frequent fainting spells, subluxations and my chronic pain got worse. I found out about EDS and immediately went to my doctor about it. I was the second case she’s ever seen in her career and thankfully she took me seriously as I documented all of my mast cell activation syndrome (MCAS) flare ups, subluxations, etc. after my diagnosis at 19 I realized how little specialists and help there is where I live (I’m from the Vancouver area in Canada). I feel very overwhelmed by my recent diagnosis and I’m hoping to find fellow zebras to talk to, and seek advice from.
