Megan King @thetravelinghaloofhope

Patient Leader

Becoming an advocate for Ehlers-Danlos Syndrome happened by chance. My journey with EDS began in September 2005 at 16 years old. I can't believe 1 decision changed the trajectory of my life forever. I've endured 35 surgeries due to EDS with the next one scheduled for September 2019. Due to limited resources I started writing my journey in the hopes to connect with others who may be struggling for answers or people to relate to. I want to be a small part of the solution with various EDS treatments because it's so frustrsting dealing with something that's classified as rare when it really isn't. No two cases of EDS are the same. This can make diagnosis difficult because there's no "face" to EDS. We are all unique individuals with our own unique presentation of symptoms. As I wrote, to my surprise, people responded to what I was sharing. There are so many with and without EDS working their butts off to make EDS more well known. We help each other out. We raise awareness in the hopes there can be better treatments & hopefully a cure one day soon. Advocacy is an important part of my life; especially since it took 10 years to be diagnosed. I never thought I'd find myself in a position to give those with EDS a VOICE; it truly is a privilege. This past year I've been fortunate to be given opportunities to share my journey and what EDS is. I've been featured in Daily Mail, Media Drum World, two Love What Matters articles, WebMD, Yoocan, SELF magazine, a soon to be released book, & a podcast. I 🖤 helping people with EDS & others with trying medical conditions. I 🖤 making connections. I 🖤 I can take my experiences to potentially help other patients get help faster than I did. When I'm having days where I'm not moving too fast I feel accomplished by going online encouraging others & sharing knowledge. My passion became even more apparent to me after my full spinal fusion revision Fall 2018. I shared the most difficult recovery of my life while at my most vulnerable. I shared the highs & lows. I knew I was connecting with others on a deeper level. One decision to share some of the most intimate parts of my life has helped more people than I ever thought possible. I'm truly humbled & honored to be in this position with so many others.

Location

Lake Zurich, IL

Nominations

Best in Show: Facebook Best in Show: Instagram Best Kept Secret Rookie of the Year

Meg is a patient leader in the EDS and chronic illness community who remains positive and kind despite having over 30 surgeries including multiple spine fusions. She always helps others by answering questions about how to prepare for surgery and maintains a positive outlook.  — Brianna

She's amazing, She's real. She's very educated on her condition. She shows her vulnerability and her strength. She's such an inspiration for other patients to continue to fight as hard as she does!!!!  — Cookie

She is a motivation for all the patients who have been thru a very bad phase of their lives. Surgeries, the non stop medications, the urge of moving frwrd in life inspite of all the physical stiffness in the body makes her apary frm others. Hats off to this lady, shes still very positive and i wish her speedy recovery. Shes is a fighter.  — Kshitija

Megan King @thetravelinghaloofhope
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