My Story

When I was younger I used to do Gymnastics, ballet, soccer, basketball and softball. I noticed that I didn't have as much energy as the other kids. I was constantly spraining my ankles and wrists and was always covered in bruises. I ended up quitting everything and just stayed in bed because I was always tired and in pain. Walking became painful. Going to school became painful. Functioning became painful. After many doctor appointments I ended up at Primary Children's. They thought that I had Leukemia. They took bone marrow and tested it. The doctor told me it was not Leukemia and that my blood work didn't make sense and that he had no idea what was going on. We settled for the diagnosis of Juvenile Rheumatoid Arthritis. Once I joined middle school my symptoms became worse. I was constantly in pain and doctors just looked at me and said "I don't know. You're just weird". I never got any answers as to why I was feeling like this. In High School I joined the tennis team. My Freshman year I stepped wrong on the court causing a slipped disc, doctors couldn't explain how simply stepping wrong could cause that. My Sophomore year I hit a ball and dislocated my right shoulder. They tried to pop it back in but it wouldn't stay. I met with multiple surgeons in Ogden and no one knew how to fix it. I finally found Dr. Metcalf at TOSH. He told me that my labrum was shredded and that I needed surgery. I had surgery in Dec 2010. He told me that with normal tennis injuries like this there was less than 10% chance that my shoulder would come out again. I was cleared to play tennis my Junior year after months of physical therapy. I made it through my entire Junior year season with little problems. A few months later I was putting my backpack on and my shoulder popped out through the back. I went back to Metcalf and he told me I would need another surgery and that I would not be able to play tennis after that. I played my senior year with my shoulder dislocated and help together by KT Tape. I got my second surgery in Dec 2012. He drilled in to my bones and put anchors in to provide more stability. Normally after a shoulder surgery you are in a brace for 4-6 weeks. He put me in my brace for 12 weeks because he wanted me to have more stability. During one of my follow up appointments he went to compare my range of motion and ended up popping out my other shoulder. He then realized there was something bigger going on than just a tennis injury. I went and saw a Rheumatologist at Mckay Dee Hospital. Dr. Dames examined my joints and we found that my joints were all loose and hyper extending. She then began to tell me that all of the pain was in my head and that I was just flexible and that I was being a hypochondriac. She tried to put my on an anti depressant. I knew my pain was real. After that I didn't go to doctor appointments for a while. I was tired of being told that I was crazy. That it was all in my head. That I was a depressed hypochondriac. It wasn't until almost a year later that I ended up seeing Tres Ferrin, a physical therapist because my hip was dislocating. He told me that he had read about an illness called Ehlers Danlos and that my symptoms reminded him a lot about it. I went and saw Steve Scharmann and he did the beighton test and I scored 100% on it. That day I was diagnosed with Ehlers Danlos Syndrome. At first I was relieved that I had a diagnosis. I wasn't crazy! I wasn't making it up! But with this diagnosis came very frustrating and complicated doctor appointments because very few doctors know about this illness. I was in and out of the ER for fainting and neurological problems that presented like a stroke, but doctors had no answers. All of these scary things were happening to my body and no one knew why. They all just said "I dont know enough about Ehlers Danlos to know what this could be". It's frustrating because you are supposed to trust doctors with your care. How do you trust someone to care for you when they have to go in the back and google EDS? In Oct of 2015 I had a hip surgery done by Dr. West at Tosh and has a hand fusion done in August of 2016 by Dr. Gowski. While I am still trying to find answers for my neurological problems and while I have run into a lot of doctors that do not know anything about EDS, I have found some amazing people that have helped me. The most important thing to me right now is patient care. More doctos need to be educated. More doctors need to be able to have the education and ability to help people like me, because we cant do this on our own. A huge thanks to all of the amazing people that never doubted me when I said that something was wrong. Thank you for believing me and educating yourself on EDS and helping me manage this illness and live my life the best I can. 
Dr. Ball- Geneticist at the U
Dr. Scharmann-Sports Med at Mckay Dee
Tres Ferrin-Physical Therapist at Mckay Dee
Darin Stratford-OT at Mckay Dee 
Sherri Duft-Physical therapist at Sundance Physical Therapy
Clay Sniteman-Physical therapist at Sundance Physical Therapy 
Sheila Savaiinaea-Massage therapist
Dr. Metcalf-Shoulder surgeon at TOSH
Dr. Hugh West-Hip surgeon at TOSH
Dr. Gowski-Hand surgeon at TOSH