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Monday, December 14, 2009

All I Want for Christmas is a Cure

by Mark Dunning

I have a confession to make. Jennifer Phillips is a friend of mine. We write this blog together. She’s a Ph.D. and spends her time learning everything she can about Usher syndrome. There is no opinion I trust more than hers.

But…

As I read her last post about homeopathy, I agreed with every word until I read one quote from the video she was critiquing. Dr. Werner, the speaker in the video, said:

And that’s why the vision system is so important, because we have lots of photoreceptors that receive light.

OK, that’s hardly profound. I think my eight year old son could tell you that after visiting so many doctors with his sister. But like many families, I still feel a sense of desperation to find something, anything, that might help my daughter. So I found myself willing to overlook, for a moment, that Dr. Werner had been painting the science of homeopathy with a very broad brush.

In fact, at that point I thought, ‘Wait? She knows what photoreceptors are? She must know something about the eye. Nobody else has a cure for my daughter. I mean, Jennifer is the first to say that we still don’t know everything about how Usher syndrome works. Who’s to say Dr. Werner isn’t on to something with this homeopathy stuff? Maybe she knows something the rest of us don’t.’

You know what I did next? Well, first I read the rest of Jennifer’s posting and felt a little queasy, but I was still not completely put off. So I looked in to homeopathy. I read in to the science behind it. I asked people I trusted who were knowledgeable about science, the eye, and Usher in particular. I looked to see what the National Eye Institute and the National Institute of Health had to say on the subject. I looked at the papers I found supporting homeopathy and then at the credibility of the journal publishing the paper. In the end I found that homeopathy probably wasn’t going to help and that it was possible that it could actually harm my daughter. So we’re not pursuing homeopathy as a treatment.

The point is that NONE of us should take the opinion of one person as gospel when it comes to treating ourselves or our children for Usher syndrome, whether that opinion is that of a trusted friend or that of a borderline science charlatan. Why? Because there are simply no agreed upon treatments for Usher syndrome right now.

Note I didn’t say NO treatments. There are several, they just aren’t all proven beyond a doubt in the eyes of all experts. There is no ‘Advil’ or ‘Amoxicillin’ equivalent for treating Usher. In fact, such a thing is never coming. There are too few of us. There will never be a pool of millions to point to as a success like there was with, say, Salk’s polio vaccine.

This will become even more true in the near future when several treatments reach clinical trial. I know many families clamoring to be included in those clinical trials. Please remember, clinical trials mean we are going to try a treatment that we don’t know will work. Are you sure you want to do that to yourself or your child without being certain that the science behind it is at least sound?

I’m not suggesting for a moment that people don’t participate in trials. In fact, for those who read my postings you know it’s quite the opposite. And I’m definitely not saying you should not be trying some of the currently prescribed interventions. My daughter does.

What I am suggesting, no, pleading, is that Usher families keep a level head before embarking on any treatment. Research the suggested treatments with great vim and vigor and determine for yourself if they are 1) safe and 2) appropriate. That means asking lots of experts and reading lots of dry science-y papers (sorry Jennifer) and checking the validity of those papers. It means understanding fully the side effects of any treatment, the worst case scenarios, the circumstances that lead to those, and the percentage chance of such things happening.

In short clear your head and think before you act. Become the expert on the subject and run away, quickly, from any ‘expert’ who doesn’t have the time to explain a treatment to you in terms you understand in the amount of detail you request. You should feel like an expert on a treatment BEFORE you embark on it.

Last week I got an e-mail from a friend of mine that read ‘All I Want for Christmas is an Usher Cure.’ I can relate. Like most Usher families, I feel a sense of desperation. We want something, anything, to help ourselves or our loved one. But we all need to follow the physician’s creed of first do no harm. A cure at a terrible cost is not a cure.

So I’ll amend my friend’s wish. All I want for the Holidays, more than even a cure, is for everyone to be safe.