I like to change the focus of this month’s blog entry from my own personal experiences with MSA to a topic that involves the thousands of people across the country who suffer from this rare and deadly disease.
One of the most common problems a person finds as they seek treatment for this disease is a lack of knowledge and understanding by the medical community about the specific nature of MSA and the unique needs of the patient. Perhaps it’s understandable for a doctor who has never seen a case of MSA (most physicians go through their entire career without encountering one – my GP hadn’t) to either fail to diagnose or worse yet, misdiagnose. In fact, many MSA patients are initially diagnosed with either Parkinson’s disease or Multiple Sclerosis, misdiagnoses which results in a loss of valuable treatment time and often counterproductive medical care.
For the first time, an organized effort is underway to heighten MSA Awareness, not only to the medical community but the public as well. To focus attention, March has been designated as MSA Awareness Month. A comprehensive website, www.msaawareness.org has been created as a central resource for physicians, interested parties, and most importantly, patients. This website also acts as a central location where supporters can learn about research, how to make contributions, or simply “spread the word.“
I urge everyone to visit the website and browse through its well arranged content. No matter whom you are: patient, physician, caregiver, relative, or friend - you’re sure to learn more about Multiple System Atrophy and how you can help spread awareness about this debilitating disease.