Monday, October 07, 2013

Moving at the speed of science

Photo: HPS, the next generation.

The other day I was watching an episode of Star Trek: The Next Generation. Dr. Beverly Crusher was in the sick bay treating Warf. She mentioned sequencing his DNA to try to predict an outcome and create a treatment. It occurred to me that, while Star Trek takes place in the 24th century, it was written in the late 1980s to early 1990s.

Think about it. We were still trying to sequence the human genome then. It costs millions and millions of dollars. Now, the price is coming down to practical usage range. The idea isn’t a 24th century dream for utopia. It is here and developing further every day. It isn’t so much a fiction now, but more of a fact.

As amazing as that is, in our lives living with HPS, it sure doesn’t feel like science is moving very fast. Instead, sometimes it feels like things are creeping along. Watching grass grow can seem to move faster.

In the last few weeks I’ve spoken with a few HPSers that I felt like were politely trying to tell me they felt discouraged. If you are one of these people, please don’t feel like I’m writing to you exactly. It’s been more than one person, so my comments are general in nature.

I’m right there with you. I think we all are. How could we not be? I could go into a long post about all we’ve accomplished from a science standpoint in the last 20 years. It would be a very long post because it really has been a lot. You all should be proud at what we’ve accomplished together.

But, let’s face it. We all want the cure. We all want the magic bullet. We want that pill we can all take that will mean we never have to worry about our futures. We never have to worry about struggling to breathe or spending the better part of our lives in the bathroom because of our GI problems. Short of that, for us, the non-science people, all the truly remarkable progress can seem long on talk and short on results.

I get it. I know how you feel. I’m right there with you. I’ve suffered too much myself. I’ve watched too many friends die. I want the cure, and I want it NOW.

Yet, if we let our frustration get the better of us, the war is lost. The cure isn’t going to happen on its own. No one cares about Hermansky-Pudlak Syndrome like we do. When you’re feeling frustrated, consider this. What is the alternative? Do we have another choice?

Our other choice would be to do nothing. If we do nothing, we know what the outcome will be. At least with frustrated progress there is some hope. When the hope for ourselves is gone, there is the hope that what we do today will benefit the kids born with HPS tomorrow.

Of course I hope we find that pill in time for me to take it. Honestly, however, I don’t see it happening. Still, the outside chance is worth it. As my pulmonary fibrosis progresses, I know the day will come when that hope is gone. Then, I pray I can hold on to the hope of the legacy for the next generation. May they never have to know what it took to get to the goal – a world where kids with HPS never have to think about what will happen when they get sick.

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