Zebras

Zebras

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.

Joanna Mechlinski

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 Association 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 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.

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Authored by: Joanna Mechlinski

There are 4 comments for this article
  1. kathy C at 9:16 am

    The opportunity for “Medical Science” to fix any of this is over. The Scientists chose the industry over Facts. It was probably not even a conscious decision. If they speak up now, their careers will be over, or the facts will be drowned out by Beliefs. The Facts are pretty much whatever these industries promote in the Media. We are past any kind of factual discussion. At one time I stupidly believed that Facts would be apparent in the Computer Age, but the reverse is true. The Industries put their Insiders on any Government Board, or Agency that might have had the ability to collect data. They used their obscene profits to buy the Media, our Politicians and Policy Makers. They infiltrated Academia, either placing Industry insiders there, or using their funding to direct the Research. Now the only “Research” that gets Media attention is the stuff that furthers their Advertising, or profits. The Public is gullible, once they believe some marketing ideology, they repeat it, and reinforce the Advertising.
    The Ignorance around the Drug issues are staggering. In this climate anything that conflicts with the official narrative is dangerous, or career ending. Every T.V News, or Newspaper Article repeats the same false narrative. They have told us that “Drugs” are the reason for our Economic Situation, and why we are not “Safe.” At the same time they run Countless Ads for Pharma Products, many of them will be proven unsafe after they are Marketed to millions. The Advertising will run even after the danger becomes apparent. In a world of Alternative facts it was easy, to reverse the explanation for a gullible public. There are Journalists as we speak, claiming that Opiates cause Pain. it is opposite World, people believe anything if it is repeated with authority, and enough times.
    The Cognitive Dissonance this created has undermined Science. At some level some of this does not “Ring True” but the pervasive power of the Media has gotten us all to explain away our own observations. The Media Over Represents the incidence of things that reinforce their narrative. We can easily check the Statistics in a reliable Source, but the facts are irrelevant. We are Post Science now. Science and facts interfere with corporate profits, so they won;t be injected other than in a Cherry picked way when they are convenient or need to make something appear credible..
    We live in a Society that can justify and explain away anything. Where the death of a child becomes a Marketing and Networking opportunity. Instead of collecting Facts and applying them to a problem, they “Raise Awareness.” A term that means absolutely nothing, or becomes an opportunity to seek Corporate Funding from the same Corporation that created the problem. The industry bought the Advocates, the ones the Media will allow to speak, are the ones funded by Industry. No one noticed when the Corporate Funding, only promoted the “Advocacy” that helped to market their products and ideology.
    A Mathematics Professor had a phrase that has stuck with me over time. I can still see him at the Front of the Class, with an Equation on the backboard. He would point to the Equation, and say “Plug and Chug.” Which meant put the variables in and then work the Equation. It worked. A complicated equation, broken down, with the variables in place becomes a lot more manageable. When we take pain out of the equation and plug in another issue, a pattern emerges.

  2. Jean Price at 7:33 am

    The amount of technology we now have has increased medical knowledge regarding many conditions and treatments to a staggering amount! So, it’s really unfair to expect any one doctor to absorb it all, even in his specific field! Yet my continuing frustration is that…when they are stumped…THEY don’t seem to even be interested in researching what’s needed to help us!! We either go with their “improvised and likely incorrect answer”, no answer at all, or we are left to do our own research! Yet if we do search for answers, we are often viewed as trying to take their power…of being the learned professional…into our own hands! Most doctors DO NOT appreciate this AT ALL!

    Years ago, health care was newly promoted as a partnership.,..where we as the patients could actually participate in our own care! We were encouraged…and even expected…to know about our disease and what we were doing to treat it! Now, we seem to have lost this concept…and to be “done unto” more often than not! Including with the current senseless situation about pain medications! With this happening more and more, “Zebras” are certainly at a disadvantage, and even the treatment of more common conditions can fall short of good care!

    Realizing they have many patients to care for,..and I just have ONE…which is MYSELF….I’m willing to give them a little leeway on this, if they’d at least be interested to hear what I may HAVE FOUND…or even what I think is wrong! Yet, again, some doctors will negate anything we offer up… just for the fact it’s not their idea or their own wisdom!

    So we are often left with substandard care….dependent on our particular doctor’s limits of experience, possibly even their mood that day, how many patients with like diseases they have seen…or how well they may have read that particular chapter in med school! All of this makes for some scary variables in health care!

  3. Sheryl Donnell at 7:14 am

    I too have been chided for doing internet research but for the exact reasons you cite, if I don’t, you can be certain doctors won’t due to lack of time, resources or pure arrogance. Just recently, my daughter, who has a history of depressing and anxiety, had to wait an extra two excruciating months for simple gallbladder removal surgery purely because her first surgeon to see her while admitted to a hospital for classic gallbladder trouble refuaed to follow the recommendations of 4 Gastrointestinal Specialists who saw her prior to and in the ER and upon admission and reviewed her results. His reasoning? He believed she was not “bad enough” from the clinical reports and it was all psychological due to her meds! Two months later after waiting to see her internist, getting referrals again, the next surgeon said it was a slam dunk. And this is a common illness. How do those of us with rare illnesses hope to survive without researching everything we can to help find out what we could possibly have when our doctors write us off? And, isn’t it important for is to try to educate and bring information to the medical community about our rare conditions when they effect so many people and aren’t as rare as once thought? Excellent doctors should still have that curiosity about their chosen fields to want to learn about diseases they never heard of, especially when one of their current patients presents with one. If a doctor no longer wishes to learn, perhaps it is time for THEM to rethink their career and not chastise their patients for bringing new information to them.

  4. Hayden at 5:40 am

    So many different forms of disease, injury, and other conditions ……that cause chronic pain yet, those ONLY interested in some quality of life have been “lumped” into the same category. As Joanna Mechlinski has stated, sometimes the zebras have spots. Personally, as well as some of my family members must deal with chronic pain, daily. Our youngest son has a rare kidney disease diagnosed at 9 years old after MANY consultations with different specialists. He is now 35 years old and as he matured, different forms of “afflictions” began to plague him. Psoriasis, fatigue, and the never ending cloud of “what next”. His many year physician, with the same rare disease, passed to a better life while “treating” my sons’ disease when he was 11 years old. He had the same disease as our youngest son. He was 45 years old. My other son, 37 years old injured his left knee while enjoying sports at the age of 27. His surgery SHOULD have been one corrective surgery but, it was botched ending in 4 .5 years of infections before he ultimately was released from the MOST prominent “hospital” in the central NC area for fear of liability. We went to 4 different care facilities before ONE caring physician agreed to “do the best he could” with surgery. Our son now has an artificial knee from the age of 31 years old. Daily pain. He is a high school teacher now. Loves young adults but, wrestles with pain, daily. My Mother, 80 years old has NO HISTORY of ANY type of “drug abuse” or alcohol use.. With aging, comes disability. Arthritis is a very common debilitating factor. She was reasonably comfortable with the assistance of “opioid medication” after suffering for years and refusing to “take a pill”. The pain won her over to proper pain management until CDC’s mis-guided-line intervened and her dosage has been reduced by 50%. Needless to say, she was NOT taking a high dosage from the beginning. Her most important agenda now is to feed herself, and bathe. It is said, well she is 80 years old though. Someday, if the creator needs it, we, you will be 80 years old ……also. Everyone knows someone that is in chronic pain yet, if we/they can’t “feel” it, it is negligible. That is where our educated trained physicians “step in”. They know when someone is having great difficulty just going about their respective daily routine whether in the “asset” world of Americas economy …….now, or not. The old saying “what comes around, goes around” is not not just a relative term in life. It will “come around”. I hope medical science does advance to better pain management methods without opioid management. The authoritarians have declared sufficient pain management with opioid medication Taboo. They are ALL “drug addicts. I must say, it pisses me off! but, The fact is, our physicians HAVE managed humanities pain afflictions quite well with before mis-guided-line enforcement .The checks and balances to hold our physicians “accountable” were working well, without the mis-guided-line authors .It HAS to be frustrating to our physicians who have “followed the rules” in opioid therapy for their patients and those doctors that really care. The last time I “heard” we still have volunteer firefighters, first responders, and other true “non profit” organizations with caring people that go out of their way to assist those in need. Emergency need in some cases. Point made, there are still people who care for one another, outside of their immediate families! Who are the people that “know best” for millions of chronic pain sufferers that have not “lived” the life? With true pain management therapy, the best management we have for many, opioid therapy, life can be lived more abundantly. There ARE good physicians, AND people, however, it can be difficult to find the “outside of the box” thinkers.