By Joanna Mechlinski.
In the 1940s, Dr. Theodore Woodward told his students, “When you hear hoofbeats, think of horses, not zebras.” Considering that the man was nominated for a Nobel Prize for his role in curing typhus and typhoid fever, there’s a reason his words became a familiar medical aphorism.
However, in today’s world, there are an increasing number of zebras. In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. According to the Genetic and Rare Diseases Information Center (GARD), it’s estimated that 25-30 million Americans are currently living with one of 7,000 different rare diseases. With this in mind, looking for zebras instead of horses isn’t all that crazy.
But according to a study by Marcio Melo of the University of Sao Paolo, published in PLOS (Public Library of Science) in December 2011, doctors often diagnose within moments of coming into contact with a patient – even before the patient has finished articulating all his or her symptoms. The type of problem-solving utilized in disease diagnosis is pattern recognition, with doctors quickly scanning their memory for similar cases. Patients with a disease that wouldn’t be commonly encountered are a clear disadvantage.
This year, The Myositis Support and Understanding Association (MSU) has taken the concept one step further, making its May 2017 awareness month slogan “Sometimes zebras have spots.” That means that even among those with a particular rare disease, such as myositis, no two patients will have the exact same symptoms. Thus, it’s critical that doctors not only listen fully to what each patient has to say, but treats the patient as an individual. None of us can or should be lumped into a category on the basis of age, sex, race or any other factor.
I was diagnosed with polymyositis, a chronic illness that causes inflammation and weakness in the proximal muscles, in 2003. Symptoms include difficulty climbing stairs or raising the arms over the head, as in hairbrushing. I wasn’t long out of college, working at my first real job as a reporter for a small daily newspaper at the time, with a desk on the second floor. My job involved running in and out of the building throughout the day, as my stories demanded. All of a sudden, one day I found I literally could not climb the stairs without relying heavily on my arms, gripping the handrail to pull me up.
From that point, I was also seized by an almost indescribable fatigue. It didn’t matter how many hours of sleep I got; I’d wake in the morning, feeling as though I were at the bottom of the ocean. Finding the energy to fight my way to the water’s surface was debilitating.
It was a relief to get a diagnosis shortly after the symptoms began. But unfortunately, I learned the hard way that there’s a lot doctors don’t know. I visited specialist after specialist, in various well-known medical facilities along the East Coast, and most had absolutely no idea what they were looking at. One doctor chided me for doing internet research. Yet if I didn’t, who would? Fewer than one out of 100,000 people is diagnosed with myositis. There is little information available, either about its possible origins or treatments. As with all rare diseases, patients learn to be their own advocates.
That’s just wrong. While it’s wonderful that the internet allows today’s patients to become more educated about their own conditions than people of previous generations were able to be, the fact remains that the doctors are the professionals. They are the ones who spent years studying, researching and learning, the ones in whose hands we place our health. So why are they unable to give much assistance to such a large percentage of the population?
While The Myositis Support and Understanding Association uses this month primary to promote awareness of myositis, its 2017 slogan reminds us that it’s important to keep fighting for all the zebras. No member of the herd should be left behind.
Joanna Mechlinski is a former newspaper reporter who now works in education. She is a chronic pain sufferer who lives in Connecticut and is a frequent contributor to the National Pain Report.