Our Stories of Strength – Living with Ehlers-Danlos Syndrome

Our SOS Media, LLC releases debut Anthology entitled, Our Stories of Strength – Living with Ehlers-Danlos Syndrome in conjunction with Ehlers-Danlos Syndrome awareness month.
Co-owners of Our SOS Media, LLC, Kendra Neilsen Myles and Mysti Reutlinger, came together with a common desire to see more positive, uplifting stories within the chronic and invisible illness communities. Both women agreed that their first book would feature stories, images, artwork, and poems from adults and children living with Ehlers-Danlos Syndrome as they have individually overcome significant health challenges related to the condition to start this business together and lead active, successful lives while raising families of their own.
Kendra Neilsen Myles’ insatiable life-long passion for health, fitness, and nutrition lead to a BS in Public Health and employment in the medical and pharmaceutical industries; leading to the formation of two businesses complimenting the industry and has spent over five years speaking within the community and over two years volunteering for EDNF. Mysti Reutlinger brings a unique dynamic to Our SOS Media, LLC through her work within the publishing industry as both an author and editor with a strong background in small business marketing. She attended school at UW, studying psychology. The women are excited to bring stories of strength, determination, perseverance, and hope to all people living with chronic, invisible illnesses confident that they, too, will be inspired by those who change the world by living well.
Learn more about Our SOS Media, LLC, and the Our Stories of Strength™ anthology series at www.ourstoriesofstrength.com.  Digital versions of Our Stories of Strength – Living with Ehlers-Danlos Syndrome can be purchased here.
EDS is a group of genetic connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; unique in presentation to each individual. The variety of symptoms and presentations proves challenging to the medical community in diagnosing and treating patients; many of whom are misdiagnosed and suffer as a result. EDS has been normally viewed as “just” Benign Joint Hypermobility Syndrome (BJHS/JHS) or Hypermobility Syndrome (HMS). Based upon recent research, the prevalence of EDS exceeds current estimates.
Excerpt from Foreword: 
“These are stories of hope and resilience, of strength under adversity, of self-reliance and new-found sources of support.   They offer one core message to all who suffer from the diverse and difficult manifestations of EDS:  You are not alone.” – Clair Francomano, MD
Endorsements from medical professionals: 
“Ehlers-Danlos Syndrome is another form of the human body. Just as there are tall people, short people, dark skin colored people, and light skin colored people, each with their own set of medical issues – similarly there are hypermobile people and not so hypermobile people who have different medical issues. Our understanding of EDS has improved, but we still have a lot of work to do. While the medical world works on understanding Ehlers-Danlos Syndrome, people with EDS have provided us with stories of courage and ingenuity. These stories give others and doctors the strength to find solutions.” – PRADEEP CHOPRA, MD
“As a physical therapist who works with many patients suffering from EDS, I’ve seen first hand how isolating and frustrating EDS can be. Along with a more knowledgeable medical field, what these patients need most is an understanding that they are not alone and to be given hope. ‘Our Stories of Strength’ provides both community and hope and will be just as effective as any medication or exercise.” – CHRISTOPHER GNIP, PT, DPT
Story Excerpts: 
From Bittersweet
“I sobbed my heart out. It was so beautiful and perfect. And I was suffering in pain, physically and emotionally. I was flooded with thoughts of doctors, well-meaning but cruel neighbors, family who didn’t understand, my failed projects, the disappointments, and the agony of being a sick person trying to be a parent, spouse, and to fight each day just to get out of bed every morning without giving up forever or over medicating. It hit me all at once – the unfairness of it all.”
From A Letter to Emily’s Mom
“From your vantage point, at the starting line of this marathon, you see only the unknown and it is terrifying. You have every right to be afraid. In fact, fear will be a tool to harness on your journey, but what you need to know is that fear, in the end, is not what will define your journey. Love is.”
From Unlocking the Doors
“Instead of giving up, my limitations motivated me to look further and made me discover other talents and ways to live a life with passion. I don’t know what the future holds, but I do know that I will always find a way to adapt and make the most out of each day.”
From Dear Teacher
“So much time and effort is spent dealing with our children’s health it becomes important not to overlook their strengths, like all children they want to do well and they need your approval. There will be areas of the curriculum that they always find tricky, we know that, so when they are good at something please don’t forget to give them their chance to shine! In the words of Magic Johnson ‘All kids need is a little help, a little hope and somebody who believes in them.'”
From Dream Job to Paralysis
“… I also look back and see what my body managed to overcome and think “Wow…I did that…while my body was badly broken for a time, I still managed to overcome that.” These days, while my health is a definite hindrance to my life, and my body deteriorating much faster than I would like or had even expected, I feel I am a stronger person mentally for it all, that I can try to meet any challenge my health throws at me head on, and that I CAN triumph over it…”
Disclaimer: Our SOS Media, LLC retains the publishing & marketing rights for each submission in the Our Stories of Strength – Living with Ehlers-Danlos Syndrome anthology.  Written permission must be granted to use any part of the anthology for any purpose other than a small synopsis included with book reviews.