Climbing for EDS

Single-Day Presidential Traverse Attempt for Ehlers Danlos Syndrome Awareness

(For campaign updates see instagram: @kayla.furbish)

The Ehlers-Danlos syndromes (EDS) are a group of 14 heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Hallmark symptoms across all types are hypermobile joints, skin hyperextensibility, & tissue fragility. Each case is unique and severity may range dramatically, even within families.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions.

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I was diagnosed with Classical-type Ehlers Danlos Syndrome when I was 15 years old, after having reconstructive surgery affecting my shoulder and hip on my birthday.

Although I was diagnosed with EDS as a teenager, I had the symptoms my entire life. I couldn't crawl or pull myself up to stand as a baby. As a kid, I couldn't do the monkey bars or ride a bike at the same age as my peers. I had many injuries and periods of serious illness that kept me out of school and out of touch with friends.

Before getting diagnosed I often felt limited by my body. After getting diagnosed I also felt limited by those around me who treated me like I was fragile or warned me about all the things I couldn't and shouldn't do.

EDS is only recently becoming more widely understood and recognized. So, at the time of my diagnosis, many of my doctors had never heard of EDS or had very limited exposure to it. Some were afraid to touch me, fearing they could injure me. Others told me I wasn't allowed to do any form of sports of I would do permanent damage to my body. One of my surgeons told me, "You can ride a bike, as long as you never fall," implying everything would be risky for me.

Then in 2014, I attended my first Ehlers Danlos Society conference and met other people with EDS for the first time. That first conference was an overwhelming experience. I met so many friends who understood the challenges of living with EDS and I was able to learn so much invaluable information from the worlds leading experts in EDS. It was during this conference that I met my incredible physical therapist, Dr. Mike Healy, who gave me my life back. The education I gained from the Ehlers Danlos Society gave me the tools to better advocate for my healthcare and understand how to manage EDS.

In 2016, with the support of my PT, Mike, and the tools to better care for my body, I was able to begin rock climbing and yoga. Through rock climbing I developed increased strength and body awareness (EDS causes impaired proprioception) and through yoga (another activity that is often misjudged to be unsafe for people with EDS) I was able to begin building a healthier relationship with my body.

Growing up, I spent so much of my life feeling weak and fragile, so much of my life viewing my body as an adversary holding me back. But rock climbing and yoga have taught me that I am resilient and strong and that I can work with my body instead of fighting against it. EDS has given me determination and taught me to really value and appreciate what my body is capable of. And I've learned that I can achieve my goals, not in spite of my EDS, but because of it.

Over the past several years as I have found ways to be active that are safe and sustainable for my body, I have gained so many new abilities and have had so many fewer injuries as a result. Playing in the mountains - hiking and climbing - has become so important to my mental and physical health and has become a really important part of my identity.

In 2017 I hiked my first 4,000 footer - Mt. Jackson - with my partner Huzefa. Now it is my goal is to hike all 48 of the 4,000+ foot peaks in the White Mountains of New Hampshire to raise awareness for the Ehlers Danlos Syndromes.

As part of that goal I am challenging myself to complete a Single Day Presidential Traverse on the Summer Solstice. The Presidential Traverse is a 23 mile hike with over 9,000 feet of elevation gain, across 10 summits (7 4,000 footers) including Mt. Washington, the tallest peak in New Hampshire.

Mt. Washington is an infamous mountain with some of the worst recorded weather in the world. For over 60 years, Mt. Washington held the world record for the fastest wind gust on the surface of the Earth at 231 mph. The Presidential Traverse is a strenuous athletic challenge for active hikers without a connective tissue disorder, usually completed in 2-3 days, and this is a challenge that I very well might not succeed in. But it is a challenge I want to attempt because I want to see what my incredible body with EDS can do!

I wouldn't be where I am today without the education I gained from the Ehlers Danlos Society and the support of my healthcare providers who are knowledgeable about EDS. We need increased awareness and funding for research so that all people with EDS can receive earlier diagnosis, access to better treatments, and live healthier, fuller lives.

Please help me in my mission to raise money for Ehlers Danlos Syndrome research by sharing my story or donating if you are able. Thank you!!

(For campaign updates see instagram: @kayla.furbish)