Twenty years ago, my life changed completely when I was diagnosed with fibromyalgia at age 30. At that time, information was scarce and help was hard to find. Facing a life of chronic pain, I began a personal journey down a road filled with physicians’ offices, contacts with allied health care providers, and conversations with other fibromyalgia patients. Along the way, I learned to understand my condition and discovered how to manage my pain and fibromyalgia. I was fortunate to have been blessed with the strength, tenacity, patience and knowledge to persevere and advocate on my own behalf, and I decided that I needed to help and support patients and families of those living with fibromyalgia and chronic pain.
In order to provide this guidance and support, I formed a nonprofit organization, Helping Our Pain & Exhaustion, (H.O.P.E.). My vision was focused on raising fibromyalgia awareness in my community. I became an advocate for chronic pain patients and their families. I developed strong relationships with members of the medical community, the media, and the public. These relationships afforded me the opportunity to increase fibromyalgia awareness and explain the impact of this disease on the individuals it afflicts and the ones who love them.
Although now recognized among most medical professionals as a verifiable ailment, fibromyalgia was disregarded and denied as not being a valid malady for many years. As we move into the future of pain management, fibromyalgia is one of many illnesses that are propelling the world forward into a new era. Inroads have been made, but there is still a great deal of work to be done. Out-of-the-box research collaboration efforts provide a positive future for those who once had little or no promise of relief; H.O.P.E. is dedicated to helping make that future a brighter place for those living with pain.
With strength and dedication, the board and members of H.O.P.E. work continuously to increase public awareness of fibromyalgia and promote education for patients, the medical community and policy makers. As patients and advocates, we need to look to the future and know that there is hope.
Sharon Ostalecki, Ph.D.