ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
Closed over Christmas
(reopened 1 February 2017)
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.
Couple works to remove stigma and isolation associated with Fibromyalgia
Tuesday 24 April 2012
Couple works to remove stigma, isolation associated with mysterious condition affecting 5 million Americans
John and Sandra Obenchain openly discuss a very personal struggle to help the millions living with the mental, physical and emotional pain of fibromyalgia
When his wife Sandra was diagnosed with fibromyalgia in June of 2009, John Obenchain thought their prayers had been answered, and that they had found the reason for her persistent pain and exhaustion. Little did he know, the diagnosis had actually opened Pandora’s box.
“Like cancer or Alzheimer’s disease, fibromyalgia is a serious medical condition,” says Obenchain. “But unlike either cancer or Alzheimer’s disease, fibromyalgia is neither well known, nor clearly understood, by the general public. The symptoms of fibromyalgia can cause people to lose their jobs and become cut off from their family, friends and the world around them. The result: Those facing the many challenges of fibromyalgia end up feeling isolated right when they need support and help the most.”
Spending most of her days in bed or on the couch, Sandra is unable to work, take care of their two young children, visit family and friends or even participate in her favorite pastime, horseback riding. She’s felt a range of emotions, from embarrassment to anger, when it comes to the challenges of her fibromyalgia; she’s also felt scared.
“Fibromyalgia has robbed me of my quality of life,” Sandra Obenchain says. “I lost my job and all of my friends but one. I never get to see my sister who only lives an hour away. I only have my children and husband and I don’t know what I’d do if I ever lost them.”
Fibromyalgia is a mysterious medical condition, with symptoms ranging from overall chronic pain and depression to sleep problems. Treatment options are just as varied, including physical therapy, medication and stress-reducing activities like light massage. Despite the large number of Americans diagnosed with fibromyalgia, few seem to know much about it. Research for the condition, while ongoing, has not provided sufficient answers.
As a result of the silence and lack of awareness surrounding fibromyalgia, Obenchain founded the Alliance Against All Fibromyalgias (AAAFMS) as anonline support group for fibromyalgiafor suffers and caregivers. Obenchain believes that the uncertainty of fibromyalgia is often responsible for feelings of fear and isolation among those affected by this terrible medical condition. He saw how doctors and employers were often unable to understand the pain and exhaustion his wife was experiencing, dismissing her as unpredictable, and claiming that her symptoms were all in her head. Due to this uncertainty, Sandra was often afraid to talk to anyone, including family and friends, about the challenges she faced in everyday life.
Sandra isn’t alone in her struggles with the isolation of fibromyalgia. Visitors to Obenchain’s onlinefibromyalgia supportgroup Alliance Against All Fibromyalgias (AAAFMS) also shared how living with this mysterious medical condition isolated them from friends and family.
“Along with losing friends, my job and my savings, my husband walked out while blaming me for my condition,” said one visitor to theonline fibromyalgia support group.
Obenchain started theonline fibromyalgia support groupAlliance Against All Fibromyalgias (AAAFMS) to encourage those living with fibromyalgia to speak out and connect with others. He hopes that by providing a virtual connection to other affected individuals, including caregivers as well as patients, he will help people avoid the isolation that often accompanies fibromyalgia. In doing so, Obenchain hopes to bring greater awareness to a painful yet often misunderstood medical condition.
To learn more about the Alliance Against All Fibromyalgias, visit:http://www.aaafms.com/.
About John Obenchain and the 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 theAlliance Against All Fibromyalgias (AAAFMS) tohelp with fibromyalgiaas well as help 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).
Direct link: http://www.prnewschannel.com/2012/04/16/couple-works-to-remove-stigma-isolation-associated-with-mysterious-condition-affecting-5-million-americans/SOURCE:The Publicity Agency
The above originally appeared here.
blog comments powered by Disqus