Megan King @thetravelinghaloofhope

Patient Leader

Becoming an advocate for EDS happened by chance. My journey began in Sept. 05' at 16. I can't believe 1 decision changed the trajectory of my life forever. I've endured 35 surgeries due to EDS with the next 1 scheduled for Sept. 19'. Due to limited resources I wrote about my journey in the hopes to connect with others. I want to be a small part of the solution for EDS treatments. It's classified as rare but 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 & without EDS working their butts off to make EDS more well known; awareness is key in the hopes for better treatments & hopefully a cure 1 day. Advocacy is an important part of my life since it took 10 years for diagnosis. 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 about my journey & EDS. I've been featured in Daily Mail, Media Drum World, 2 Love What Matters articles, WebMD, Yoocan, SELF magazine, a soon to be released book, & a podcast. I 🖤 helping people with EDS or other medical conditions. I 🖤 making connections. I 🖤 taking my experiences to potentially help a person get help faster than I did. When I'm having days where I'm not moving 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; 1 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 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

Her Bravery, perseverance and Courage to share such personal suffering  — Lisa

Megan King @thetravelinghaloofhope

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