As most of you know, several years ago I lost my ability to speak due to a rare voice problem called Spasmodic Dysphonia. My doctor and the specialists that he recommended were baffled. No one knew what was causing it. And until you have a name for your problem, it is nearly impossible to find a solution.
After a year of searching online for every variation of “voice problem,” and finding nothing like my symptoms, I finally – by luck or inspiration – landed on a search term that changed my life: “Voice dystonia.”
I had some history with a pinky spasm caused by overuse of my drawing hand. That condition had been quickly diagnosed years earlier as a focal dystonia (a muscle spasm issue) that is common to musicians and artists. One day, while thinking about nothing in particular, I realized that my voice problem and my hand problem could be related, even though separated by years. So I Googled “voice dystonia” and up popped a Youtube clip of someone with my exact symptoms, labelled spasmodic dysphonia.
Now I knew my enemy’s name, and that led to an eventual surgical solution.
Imagine an estimated 50,000 people in the United States alone who have the same voice problem. As I learned during my keynote address to the folks at the NSDA (National Spasmodic Dysphonia Association), people live with this problem for YEARS because their doctors don’t know what it is. If sufferers knew the name for their problem, they could get surgery (which does not work every time) or Botox injections, which work for many.
I wonder how many people with other rare conditions are having the same problem. Search engines are designed to find the most popular content, not the most obscure. But in the case of medical issues, the obscure stuff can be life-and-death important.
The people who lose their voices to spasmodic dysphonia often lose their careers and their relationships too. And you go through life like a ghost in the room. Most of us, including me, were misdiagnosed as mental cases because of how the symptoms present. Trust me when I say you can’t imagine how bad the situation is for sufferers.
And Google could fix half of the problems for these folks in ten minutes.
My suggestion (which might already exist?) is that Google and the other search engine companies treat rare medical conditions as exceptions to the normal ranking formulas. The most elegant fix would be a prominent line at the top of any medical search that offers to show the rare conditions first. That won’t take up much real estate on the page, and anyone with a hard-to-diagnose condition would click it for sure.
A faster fix for Spasmodic Dysphonia is to force the NSDA website to pop up on the first page when “voice problem” is the search term. Today you have to drill down to find it, and the top results are generally out of date. (Surgery is usually not even mentioned.) My best guess, based on the general competence of the public, is that probably half of the people with spasmodic dysphonia (who tend to be over 50) can’t find it in a search when they use terms such as “voice problem.” (The search was far harder a few years ago and has improved some.)
And WebMD, I’m looking at you too. Please take a look at your “voice problem” search results. You would help a lot of folks with one prominent link to the NSDA site.
On a side note, when I spoke to the folks with Spasmodic Dysphonia at the NSDA event, I started by saying what speakers often say: “I’m happy to be here speaking to you today.” I swear no one ever meant it more than I did.
Google, Bing, Yahoo, WebMD, what do you say? Get back to me. Seriously.
In other news, how about an insertable vibrator for women that collects data so she (or her partner) knows how to do things better next time? This seems like the step that happens right before men become obsolete. But for now, the device is more about collecting data. I would expect version 3.0 of the vibrator to someday remove men from the loop entirely and use the data for its own selfish purposes.