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HPS’ers where art thou?

One of the biggest jobs of the HPS Network is outreach. No one, especially doctors, believe me when I tell them most of the calls we get from people suspecting they’ve got HPS and seeking testing come from patients who have found us pretty much on their own.

Referrals from doctors are pretty rare.

Because HPS is so rare, most people that have it are probably completely unaware the syndrome exists. They likely know they have albinism. They may or may not (depending on the severity) be aware they’ve got a bleeding disorder. If they’ve got bowel issues they’ve likely been told they have Crohn’s disease, or irritable bowel syndrome. And, often those with breathing problems have been told they’ve got asthma or pulmonary fibrosis.

Doctors have a tendency to focus on the part of the body that they’re experts on – the lungs, or the guts or the eyes – and sometimes they miss the picture created if you put all of those pieces together.

Right now one of the biggest priorities of the HPS Network is to find people who would benefit from the Pirfenidone trial underway at the National Institutes of Health. These are people who have HPS and pulmonary fibrosis and who don’t have too many other medical complications.

A few weeks ago I had an “ah –hah” moment. What’s the first thing you do nowadays when you’ve just been diagnosed with some strange new illness? Yep, you google it. You hop online and try to learn something about it. And, if you’d just been diagnosed with pulmonary fibrosis, and you knew you had albinism – wouldn’t you likely click on a link that reads, “albinism and lung disease”?

So, I launched an experiment with Google’s sponsored keyword search program. I created an ad that links to the HPS Network Web site. I’m funding the ad with revenues from the google ads that appear on my blog. (Donna and I decided that it would be faster if I just went ahead and did this rather than waiting for the check to arrive, me to cash it and send the money to the Network, and then the Network to send it back to me to buy the ads. I’m buying the ads with the banner money and submitting the receipts as an in-kind donation. It just cuts out the middle man.)

When people search for terms such as “pulmonary fibrosis” “treatment pulmonary fibrosis” or “symptoms pulmonary fibrosis” hopefully our little ad will pop up and peek the interest of anyone who might have the albinism/pulmonary fibrosis combo.

For the first week the experiment went great! We had several thousand impressions and probably about 15 clicks on the ad. I know that doesn’t sound like a lot – but I’m not trying to get the entire world to click on the ad. I’m paying for it each time they do. I only want people with albinism and lung disease to click – and there likely aren’t many of them. Grin! So, I thought those were pretty good results.

This week, however, the little ad hasn’t done so well. I barely ever see it when I go searching. It’s getting way fewer impressions according to the ad reports.

As this program sort of works like an auction for ad space, I upped my “bid” sort of speak. I cut down on the number of search words leaving only the choicest ones.

Meanwhile several of us on the board have been researching ways to buy advertising in publications popular in the Puerto Rican community (as HPS is most common among people from Puerto Rico.)

Yes, we want to find people who would benefit from the protocol – but we also want to help people get an accurate diagnosis. Knowledge is power. You can’t fight something if you don’t know what it is.

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