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A Real Disease Needs Real Research

Posted on: Wednesday, 30 March 2005, 03:00 CST

Pain - imagine having to live with it every day of your life. I suffer from an invisible and incurable autoimmune disease. This disease is so horrendous we call it "the dragon within."

Awareness is the only way to get the recognition and cure we so desperately need. Accordingly, we will acknowledge this disease with an annual Fibromyalgia Awareness Day May 12. Locally, we hold Fibromyalgia Awareness Day 9 a.m. to 12:30 p.m. May 7 at Heart of Lancaster. Call 426-0250 for details.

Just six years ago I was a productive human-resources professional. Soon I found I could no longer remember simple things - taking attendance, reporting absences, etc. Every day of my life now is filled with pain. I never know from one day to the next if I will be able to get out of bed. Some days I need assistance getting dressed, others I can do everything but zip my jacket. Imagine how embarrassing it is at my age (60) not to be able to dress myself!

While I waited for Social Security, I learned what it is like to be dependent on others.

Fibromyalgia is the third most frequently diagnosed disease by rheumatologists in the United States today, yet it is at the bottom of priorities for funding for research under the National Institutes of Health Muscle Skeletal Division. The disorder is often laughing referred to as a "woman's problem." This is a grave medical error. At least 35 percent of those afflicted are men, and the disease strikes children also.

People with fibromyalgia are subject to more than 60 symptoms, but the medical problems most commonly associated with the disorder are widespread body pain, insomnia, irritable bowel syndrome, chronic fatigue, and irritable bladder. Chronic Fatigue and Immune Dysfunction Syndrome is a distinct entity, and this disease causes cognitive impairment, neurological problems, chronic body pain and nonrestorative sleep. Recent research has shown the prevalence of CFIDS to be approximately 8 patients per 100,000 population. The rate of fibromyalgia is thought to be 3 percent of the population. These numbers indicate a problem of serious public health proportions.

Unfortunately, too many people can't find a doctor who knows of this illness, so they go through life being told "it's all in your head"! Awareness of this disease will help us find a cure, but I need your help. So many of my friends who had this disease gave up. They feel there is no hope, so they took their lives! I run a support group for people with this disease. I know that a cure will be found, but I fear it will be too late for my friends and family.

We need research money and more doctors to do the research! Fibromyalgia does exist!

Eileen Rzecinski, Marietta

(Copyright 2005 Lancaster Newspapers)

Source: Sunday News; Lancaster, Pa.

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