Life With Medical Zebra Stripes: My EDS Diagnosis

April 14, 2016

I’ve yet to meet many other Ehler’s-Danlos Syndrome patients who can recall the exact date the syndrome changed their lives forever, but I remember my first experience of Elher’s-Danlos Syndrome, or EDS, pain.

It was January 10th, 2003, and I was a sophomore in high school. After multiple ER visits and months of being in agonizing pain, my amazing and caring mom had somehow managed to have me seen at Children’s Hospital in Seattle to a specialist for adolescent pain.

The appointment was something I forsaw to be my saving grace before I arrived, unfortunately, I could not have been more incorrect.

For the next two years I was treated at Children’s for Complex Regional Pain Syndrome, CRPS. Once I turned 18 I was told I would need to find a primary care to see me as an adult now, and upon receiving the boot with no treatment plan in place, I continued to search for doctors to help me. In 2009 I finally met a rhematologist who suggested I had fibromyalgia, rather than CRPS, which brought me hope at the time that maybe I could do something to feel better than I had been, again I hadn’t quite put together the whole picture of my symptoms.

However, without the full picture, my health had only continued to decline, to the point where school, and work weren’t activities I could physically keep up with. Finally in 2011, after finding a marvelous rheumatologist, Dr Andrew Solomon at the Seattle Arthritis Clinic he suggested I see a geneticist at the University of Washington to be evaluated for the genetic connective tissue disease, Ehler’s-Danlos Syndrome.

In November of 2011, I finally had a diagnosis of Ehler’s Danlos Syndrome-Hypermobility Type. Thanks to my geneticist, Dr. Mitzi Murray, I had answers sought after for years. This, sadly, had taken nearly a decade before finding the right diagnosis…and in that time, I suffered greatly; I lost friends, people closest to me didn’t believe or understand me, I started to lose my functional abilities, I felt betrayed by my body, and so, while it may not sound logical, having this validation of a proper diagnosis made the world of difference to me for so many reasons.
Once I finally had a diagnosis that fit all of my symptoms, I was able to pursue specialists who could help me with stabilizing my worst joints and other specialists who could help with operations to relieve some of my pain.

Although the procedures have done more for me than anything else,-except for the one when my left lung was ‘knicked’ resulting in phmeumothorax -even after 28 surgeries, I wake up every day in pain. However, I’ll NEVER say I’ve been unlucky, quite rather the opposite! I have had incredible insurance to allow me the many stomach, hips, shoulders, wrists, thumbs, arms, and cardiac procedures-and even luckier to have the knowledgable and talented doctors at my resources. Another huge improvement in my quality of life upon my diagnosis? I was able to finally meet people who could relate to my health issues so well, it was a blessing.

At our very first support group, Troy and I met Kellie Selzer Doyle, who instantly became my best friend. I’d never had a friend who I could call at 2am and who would truly relate to all my pain and frustration. Losing her in January 2014 was the most painful experience. All these surgeries, and specialists have played a huge part in helping me have one of the greatest days of my life, my wedding. I was even able to walk down the aisle instead of being wheeled! It couldn’t have been a more perfect day, and as my husband, Troy, and I have been looking into our options for having a family, I constantly remember that perfect day and how lucky I am-especially when I don’t ‘physically’ feel so lucky. Just this past month, Troy and I learned through genetic testing that I was being retyped to Vascular Ehler’-Danlos Syndrome, on account of my father’s family history of family members with aortic dissections being so high.

There is no cure for EDS, Hypermobile or Vascular, but I cannot and will not give up hope. After all, in 2015 I helped to pass Rare Disease Day in Washington State by visiting Olympia and speaking about my rare disease after having called many representatives and our senators to advocate having a Rare Disease Day, and we accomplished receiving a Proclamation!
I hugely advocate for all invisible disabilities, especially because for over 13 years most people haven’t understood me, and have judged my medical issues and diagnosis. My husband and I are experiencing this even more as we talk about possibly having a child of our own as some medical professionals have suggested that my limitations and need for care and help myself demonstrates why we should not have a child. If I could only introduce people to see my husband and I even on one of my worst days in the ER-even when I’m in pain and crying, he’s there holding my hand and making me laugh, and as crazy as it sounds-there is no place I would rather be than next to him-even if it’s a hospital.

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