ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Desperate, determined husband, caregiver launches effort to unite those affected by Fibromyalgia
Sunday 24 June 2012
Desperate, determined husband, caregiver launches effort to unite those affected by fibromyalgia
Creates YouTube video, and "Fibro is Real" petition, to encourage mainstream recognition of fibromyalgia as a legitimate disease
Those who have fibromyalgia know all too well its debilitating impact, as do their loved ones.
There are new drugs designed to treat chronic pain, Lyrica by Pfizer and Cymbalta from Eli Lilly, and fibromyalgia is now recognized as a “diagnosable disorder” by the National Institutes of Health and the American College of Rheumatology. Still, many skeptics in the media, the medical community, and the insurance companies, are reluctant to recognize fibromyalgia.
As a result, many who have fibromyalgia are forced to suffer needlessly as they search for answers that can be difficult to find, and spend their life savings on medications that may or may not be helpful.
John Obenchain is on a mission to change that.
Obenchain’s wife of 11 years began showing signs of fibromyalgia shortly after their wedding. Every day that he watches her suffer, Obenchain finds it hard to believe that there are people who still don’t consider fibromyalgia to be real.
Today he launched a YouTube video and a “Fibro is Real” petition on Change.org to unite fibromyalgia sufferers, caregivers and their families throughout the world.
“I’ve been blessed with perfect health, but my wife isn’t so lucky,” says Obenchain in the video. “Fibromyalgia: It’s hurt my wife in ways I’m sure you understand. The thing is, when fibromyalgia hurts my wife, fibromyalgia hurts me; it hurts our 10-year-old son; it hurts our four-year-old daughter. In fact it hurts our entire family.”
In the two minute video, Obenchain admits that, despite his wife’s fibromyalgia, their family remains intact and they’re fighting together to change people’s perceptions. He appeals to like-minded families in the hope that others will join him on this noble cause.
In the video, he acknowledges that he cannot accomplish the mission without help from millions of others whose lives have been touched by fibromyalgia.
Obenchain launched the grassroots campaign to persuade skeptics in the media, the medical community and the insurance companies that fibromyalgia is real; that it affects not just those who are sick, but their caregivers, friends and families as well.
“I’m sure you know how frustrating it is when I can’t get my little girl to understand why mommy can’t get out of bed in the morning,” says Obenchain in the “Fibro Is Real” video. “What’s truly frustrating, what’s truly aggravating, is that I can’t seem to get anyone else to understand what’s going on with my wife… people, they tell my wife that her symptoms aren’t real and she’s made them up.”
There are many active fibromyalgia organizations today; these include: The National Fibromyalgia Association, LivingwithFibro.org, The American Fibromyalgia Syndrome Association, Inc., National Fibromyalgia Research Association, National Fibromyalgia and Chronic Pain Association (NFMCPA), Advocates for Fibromyalgia Funding, Treatment, Education and Research (AFFTER). There are also support groups: DailyStrength.org, mdjunction.com and supportgroups.com.
Earlier this year, Obenchain created his own online fibromyalgia support group for fibromyalgia caregivers. His group is called The Alliance Against All Fibromyalgias (AAAFMS).
Follow John’s progress on Twitter: @FibroIsReal or with the hashtag #FibroIsReal.
To read and/or sign the petition visit: http://chn.ge/KRBEj2
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 degree 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).
SOURCE: The Publicity Agency
The above originally appeared here.
blog comments powered by Disqus