Wearing zebra print clothing
NET cancer is considered a rare disease. As a result, I post some things on our Facebook page–and elsewhere–about other rare diseases and about Rare Disease Day, which this year is February 28. Part of the effort to raise awareness of rare diseases is a campaign to get people to wear zebra print articles of clothing on that day, much as the American Heart Association tries to get people to wear red on February 2 to raise awareness about heart disease in women.
…sometimes a zebra is far more deadly than a lion.
That sounded like a reasonable idea to me, so I began posting about it a couple of weeks ago. Then I got a note from a friend last night asking how getting people to wear zebra print items was going to help people with rare diseases. It was a good question. The note got me to realize that while there were lots of pieces of PR making the rounds about wearing zebra none of us were really doing a very good job of explaining to people why we wanted them to do that.
Why a zebra?
Doctors refer to “rare diseases” as zebras. It comes out of their training in medical school and as interns: “When you hear hoofbeats, think horses, not zebras.” The mantra is there to remind doctors the most likely cause of a particular symptom is a common illness rather than a rare one: a cough is more likely a chest cold than it is lung cancer, more likely a standard lung cancer than mesothelioma–the type caused by exposure to asbestos–or cystic fibrosis.
…early discovery is important for all rare disease patients.
But just because a disease is rare–in the US that means there are fewer than 200,000 people directly affected by the disease–does not mean no one has ever heard of the disease. Cystic fibrosis and ALS–the disease often referred to as Lou Gehrig’s Disease–are rare diseases by that definition. Yet it would be hard to find an American–let alone a doctor–who is not aware of each of those. A month does not go by that I don’t get a solicitation looking for money to support research into both.
It’s not the size of the zebra
Unfortunately, for every “rare disease” people have a significant awareness of, there are hundreds, perhaps thousands most people–and most doctors–have never heard of. And it has little to do with relative prevalence. Cystic fibrosis, which has a large and effective foundation raising funds for it, for example, was responsible for about 3,700 deaths from 1999-2006. Over seven years it killed about one-third as many people as NET cancer kills in a single year. Cystic fibrosis affects about 30,000 people in the US–and 70,000 worldwide. ALS affects about 30,000 people at any given time in the US–about a quarter as many people as have been diagnosed with NET cancer.
Doctors refer to “rare diseases” as zebras.
Both cystic fibrosis and ALS are terrible diseases. I have seen both up close and would do nothing to cut the funding for either disease. But I have a long list of other rare diseases I have seen up close that affect more people but do not get the attention or the funding they need from either the general public or the federal government.
Rare diseases and doctors
More importantly, awareness among doctors of most other rare diseases is also very low. They may see the disease but not recognize it as easily as they might cystic fibrosis. And like cystic fibrosis, early discovery is important for all rare disease patients. The sooner the disease is spotted, the sooner whatever treatments we have for the disease can start–and that can make a significant difference for the quality of life those patients’ experience.
NET cancer is considered a rare disease.
We need everyone to be much more aware of the many lesser-known “rare diseases” that are out there. Greater public awareness will lead to more funds so that we can do more research. Greater physician awareness will lead to earlier diagnosis, earlier treatment, and a better quality of life for both patients and their families.
Join the zebra herd
So please, find some kind of zebra patterned item you can wear on February 28. Encourage the people you know to do likewise. Educate yourself about a rare disease or two that you have not heard of. Help us raise awareness not only about the NET cancer zebra–but about all the zebras that are out there–because sometimes a zebra is far more deadly than a lion.
