I always remember as a child feeling sick; I was never able to run as fast as the other kids, I was always hurting myself, and I was up a lot in the night crying in pain with what I was told was “growing pains”. As a teenager I started noticing that I was getting sick too much, I slept a lot, I had pain to the point where I couldn’t walk home from school and I couldn’t participate in gym class. I used to freak my friends out with “party tricks” by bending my fingers back, flipping my eyelids, and pulling on my skin.
In my 20’s I was at the doctor’s a lot, I was always told I had “anxiety”. I complained to my doctors constantly, I saw every specialist available and was put through countless tests and procedures. I was tested for cancer, brain tumors, injuries and the tests always came back negative, nobody knew what was wrong, which caused them to not believe me or misdiagnose me.
When my daughter was as young as 2 years old she complained of pain in her legs and back, and she had headaches, I thought “What 2 year old has that kind of pain?”. As she grew older she started showing signs of bowel issues, had dislocations in her shoulder and ribs, and her fatigue was relentless. I started taking her to the doctors because I knew that this didn’t make sense, she was just like me and something was wrong.
I’m thankful for my current family doctor, she has done her best to take me seriously. She originally diagnosed me with Fibromyalgia and most of my symptoms fit, but so many didn’t and the medication she prescribed wasn’t helping. One day I came across something called Ehlers Danlos Syndrome (EDS), an inherited connective tissue disorder. This caught my attention, it fit my symptoms perfectly; the hypermobile joints, skin stretching, joint dislocations, widespread pain, and bowel and bladder issues. Hypermobility and Ehlers Danlos Syndrome are not widely understood by the medical community, bu the impact of the disorder impacts almost every aspect of my life.
Upon recommendation from a friend, I made an appointment with AJ at V2innovations. He was familiar with my symptoms and the relief braces can provide. In consultation with my family doctor, V2innovations was able to assist me in securing funding for the devices my daughter and I needed to enable us to live a fuller life. Our condition is rare, and there is a long road ahead, but now I am hopeful we can navigate through this.