When John Obenchain’s wife Sandra was diagnosed with fibromyalgia in June of 2009, he could have used an online fibromyalgia support group to help him and his family through the hard times. Obenchain would have liked a friend to talk to, a shoulder to cry on, and most importantly, someone with experience in the world of fibromyalgia to explain what was happening to his wife.
Instead, the concerned and loving husband created Alliance Against All Fibromyalgias (AAAFMS), an online fibromyalgia support group that allows individuals touched by fibromyalgia to connect. Through an open online forum, those diagnosed with fibromyalgia, their caregivers, doctors, health care professionals and other interested parties are able to share their stories, struggles, questions, advice and fears.
Obenchain had no idea just how far the community he created would expand. On March 5th, a woman named Kathy contacted the online fibromyalgia support group for information on starting a support group of her own in Belgrade, Mont. Three days later, a woman named Kris submitted her own story about how she founded the New York Fibromyalgia Association, Inc. after she had been diagnosed. Over the course of the next week, Obenchain was able to connect the two women so they could work together to help others touched by fibromyalgia.
“Kris was so informative, and her willingness to help Kathy was truly inspiring,” Obenchain says. “It was great to see the power of the Alliance Against All Fibromyalgias (AAAFMS) at work.”
In addition to connecting patients and doctors, caregivers and health care experts, Obenchain’s online fibromyalgia support group promotes other organizations dedicated to helping those whose lives have been touched by fibromyalgia. A woman named Missy submitted her story to the Alliance Against All Fibromyalgias (AAAFMS). Her story included information about her personal business, The Equine Support Center for Fibromyalgia. When Obenchain published her story on his website, aaafms.com, he included the information on Missy’s business, and a link to her website. This technique not only enables individuals affected by fibromyalgia find comfort in the stories of others, it also provides them with access to resources they may not have found on their own.
Having watched his wife Sandra struggle with the medical condition for many years, Obenchain knows fibromyalgia is not an easy battle to go through alone. He hopes that the online fibromyalgia support group he created becomes the go-to outlet for individuals to voice their frustrations, thoughts and experiences while finding a source of comfort, knowledge and assistance.
For more about the Alliance Against All Fibromyalgias (AAAFMS) please visit: http://www.aaafms.com
About John Obenchain/Alliance Against All Fibromyalgias: John Obenchain has been married to his wife Sandra for over 11 years. Together, they have faced her fibromyalgia diagnosis head on. As primary caregiver and head of the household, Obenchain has seen just how drastically fibromyalgia not only affects the patient, but the entire family. He started the Alliance Against All Fibromyalgias (AAAFMS) to help individuals diagnosed with fibromyalgia as well as caregivers, families, friends, doctors, government policy makers and health care professionals. The free, open forum allows participants to ask questions, offer advice, share stories, and find comfort from others who may be going through similar situations with fibromyalgia. Obenchain, who has a master’s in business administration, has worked in the global pharmaceutical industry for over 15 years and is a professional public speaker registered with the National Speakers Association (NSA).
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What an inspiring story! It’s so encouraging to see someone take a negative situation and turn it into something positive that provides fibromyalgia support for people across the country.
My mom has fibro and it was very difficult for my dad to take on both parental roles. She went undiagnosed for years but finally a “progressive” doctor delved deeper. Fibromyalgia has come very far in the medical community but there’s still so much for all involved to learn.
As an additional free resource for finding or starting a FM, or most any other type of, self-help (i.e., peer-run) support group, see if there’s a local non-profit “self-help group center” in your area of the world:
http://www.mentalhelp.net/selfhelp/selfhelp.php?id=859
We can never really discount the value of peer support in patients of rare diseases and their families.
Our group, Ben’s Friends (www.bensfriends.org), have been assisting patient communities of over 30 rare diseases, including Living with Fibro (www.livingwithfibromyalgia.org).
How about reaching out and visiting our website and see how you and your loved ones could gain further help?