Press Inquiries – Our Stories of Strength

Press Inquiries – Our Stories of Strength

oursoslogoFor press inquiries, please email:, or call: 240-687-7791.

To read our press release, go to: Our Stories of Strength Press Release

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… 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

Thank you for this ground breaking work of inspiration! The collection of work is long over due and will begin, in many, many ways to give VOICE to those Living with Ehlers-Danlos Syndrome. A human soul is a dynamic being. We are connected to a multitude of people and systems and responsibilities of being in this world. The hand selected pieces share a glimpse into the many aspects of what those Living with Ehlers Danlos Syndrome face,as well as how it effects their intimate relationships, families, social worlds, and especially themselves. Isolation from experience is important in any healing experience. This book gives global recognition to many struggling to be understood, heard, and identify with “THAT VOICE”. Most optimistically, it leaves room for the willing medical community for empathetic understanding such as therapists, PT,OT, PCP, Genetic Counselors, Pain Specialist and the growing number of specialist that are finally working together.”

Monica Cyran

For the thousands of us living with EDS and all the accompanying disorders it brings with it this book is a gem. What a beautiful collection of narratives to educate and inspire. This book is not only for those who are diagnosed but also for the ones who know and love them and are struggling to understand what the day to day challenges and triumphs are like. Pure gift.”

Monica Snyder 

I feel very honored to be part of such a strong and great community. Reading all these stories of strength helped me a lot to not feel alone and even to learn new things about my disease and how to handle it. I cried a lot because some of the stories were so similar to mine that I could even feel the pain. It is very rare to find a book which leads you to all kinds of emotions but leaves you with only one thing in mind: hope. This is an inspiring book not only for people with EDS but for everyone with a chronic condition. I am happy to read more books like this.”