Dr. Epler Where Are You?

Dr. Gary Epler in Boston identified and named BOOP back in 1985. He created an interactive website, that doesn't seem quite so interactive these days.

It features "BOOPTOWN" which was meant to be interactive, but doesn't seem to work when you click. There's good basic information and links from this blog to that website can be found in earlier posts.

There's also a web page for a non-profit he heads related to BOOP, COPD and other specific lung diseases. The last Annual Report is from 2005, which makes me wonder about the status of the non-profit and current efforts to disseminate information about BOOP.

I have one main question. I reviewed what the non-profit was interested in supporting. What I did not see was anything related to "support services," for those suffering with BOOP.

In my BOOP experience, thus far, I was essentially sent home with a bunch of pills. That's it. A little verbal description of what to expect from the prednisone.

What's missing in the treatment protocols is the kind of social-services support one might expect for diabetes or cancer patients, i.e.,

• clear, diet suggestions to help support health during the treatment (maybe they haven't studied that yet, but it would be helpful),
• psychological support services for how to cope when "'roid rage" hits, say a phone number to call, and
• possibly setting up a link to a network of other BOOP sufferers who could provide support.

I'm sure there are other great ideas that would be valuable to the patient. As a grants writer, I'd be willing to work on that.

With an estimated 25,000 annual sufferers nationwide, this could be a great support system, a wonderful way to track BOOP for the doctors

So far, an outreach email has gone unanswered, and my next plan is to call directly.

If anyone knows what's happening with Dr. Epler, please let me know.

If anyone has more ideas for the BOOP Complementary Support System Project (I guess I just named it), please let me know.