Our SOS Media, LLC releases debut anthology in the Our Stories of Strength anthology series featuring over 50 stories from people living with Ehlers-Danlos Syndrome in conjunction with Ehlers-Danlos Syndrome awareness month.
Ehlers-Danlos Syndrome (EDS) is classified as a rare disorder affecting 1:5000 people. Based upon recent research, the prevalence of EDS exceeds this number and could be as high as 1:100 to 1:200 people (Collins, 2015; Nielsen, 2013). Ehlers-Danlos Syndrome is a group of heritable connective tissue disorders that can cause a wide variety of symptoms throughout different body systems; each unique in presentation to the 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.
Co-authors Mysti Reutlinger and Kendra Neilsen Myles both live with Ehlers-Danlos Syndrome and associated comorbid conditions, which sparked the anthology inception and led to the business formation with core values of giving back to non-profit organizations, creating jobs for people living with invisible and chronic illnesses, and providing an outlet to those willing to share their stories through submissions in the Our Stories of Strength anthology series. Our SOS Media, LLC recognizes that it is through opening doors to needed conversations and sharing stories of strength, determination, and perseverance that we are able to facilitate positive changes to the way we live and help shape perceptions of those around us, as well as in the medical community.
Learn more about Our Stories of Strength™ by clicking here. You can also contact Kendra Neilsen Myles (firstname.lastname@example.org) for more information about stories from contributors near your community and how you can further awareness, education, and funding for studies.
To read PR Release via PR WEb, click here.
To order Our Stories of Strength – Living with Ehlers-Danlos Syndrome, go to Amazon.com for the print version or the Kindle version. You can also find Our Stories of Strength – Living with Ehlers-Danlos Syndrome on Barnes and Nobel.com in print and for the Nook and on SmashWords.
Press and reviews
“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
“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 firsthand 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
“Even in the foreword I felt as if I was reading my own story…..it had my attention right away and I went from reading the sample to making the full purchase within minutes. So great to at least know that I am not crazy….well maybe just a little but more appropriately I might have this disease and I can feel validated. Easy to read…and keep reading.”
– An Amazon Reviewer