Why Awareness Is Important – Fibromyalgia Awareness Day
With Fibromyalgia Awareness Day approaching (May 12), I thought this would be a good time to talk about why awareness of this or any illness is so critical. I would even go so far as to say that awareness is the cornerstone upon which future medical advances are built.
Following are a few of the areas in which I believe awareness has made a tremendous difference for fibromyalgia patients. I'll use my own personal experience as an example.
Research: There are at least two reasons why research is dependent on awareness. First, if scientists are not aware of a disease or don't know how prevalent it is, they will have no reason to study it. Second, scientists cannot pursue research projects without funding. If potential funding sources, whether they be the government or private foundations, are not aware of how debilitating a disorder like fibromyalgia can be, they won't be willing to fund much-needed research.
Fibromyalgia is a good example of the difference awareness makes in research. In 1996, the year I was finally diagnosed with FM, very few people – or medical professionals for that matter – had ever heard of fibromyalgia. That year, according to a PubMed search, there were just 162 published studies related to fibromyalgia. In 2011, now that 92 percent of people have at least heard of fibromyalgia, there were 612 published studies. So far in 2012, we're averaging 55 fibromyalgia studies a month. If the trend continues, there will be close to 900 new studies on fibromyalgia by the end of the year.
Diagnosis: It stands to reason that if health care professionals are not aware of a disease or don't know much about it, they're not going to recognize it or be able to diagnose it. When I first developed symptoms of fibromyalgia in 1989, very few health care professionals knew anything about it. It took seven more years and multiple doctors before I finally got an accurate diagnosis.
I haven't been able to find any statistics on the average length of time it currently takes to get a diagnosis, but I hear from a lot of people who were diagnosed in less than two years – many in less than a year. Awareness had definitely reduced the length of time from when a person first seeks medical help to when they get a diagnosis.
Treatment: The area in which awareness may have made one of the greatest differences is treatment options. When I was first diagnosed with FM 16 years ago, I was give no treatment options – zero. I was simply told what I had, that there was no cure and to do the best I could. That was it.
Now, thanks to increased awareness, there are three medications that are FDA-approved to treat fibromyalgia, several additional medications that can be prescribed off-label and numerous alternative and complementary therapies that have proven to be effective in reducing fibromyalgia symptoms. Granted finding the combination of treatments that works best for you can be an ongoing challenge, but at least we now have many options to try. So much better than the zero options I was given.
Government Support: There are many reasons awareness is crucial when it comes to government support for fibromyalgia or any other disease. One is in the aforementioned area of research. The government is by far the largest funder of medical research. The more awareness they have of the seriousness and prevalence of an illness, the more funding they are willing to devote to it. Two, the government provides quite a bit of free information on health issues, both on their Websites and in free printed publications. Three, governmental awareness of fibromyalgia has been essential in making it possible for people who have been disabled by the disorder to be able to apply for disability.
Personal Support: Awareness has already made a significant difference in how other people view those of us who have fibromyalgia. According to a recent survey, 41 percent of the general public believes people with fibromyalgia are courageous. While this is definitely progress, based on what I hear from many of you, we still have a ways to go when it comes to gaining the understanding and support of our families and friends. This may be the area where we still have the greatest need with it comes to promoting awareness.
This need is why Dr. Dawn Marcus and I have asked you to take part in the Fibromyalgia and Family Impact Survey. We're hoping to find ways to help you, with the aid of your healthcare professionals, work toward improving your personal relationships.
Prevention: Prevention is not an area we talk about much in relation to fibromyalgia because we don't yet know any way to actually prevent it. What awareness can do, however, is help people and their doctors to recognize and treat it early, which can significantly improve the prognosis. We can encourage people not to put off seeing their doctor if they have fibromyalgia-like symptoms. Although there is still no cure, early diagnosis and treatment may result in much better control of the illness.
Here's to an ever-increasing awareness of fibromyalgia!