01 December 2010

A Cure.

Tonight, Brian and I put the kids to bed right in time for me to snuggle on the couch in my pajamas with my laptop to attend a very important meeting (Brian had to study).  The Cystic Fibrosis Foundation was offering a webinar called, "Research and the Future of CF Care" at 8pm tonight.

Each year, all the CF experts in the US get together at an annual conference.  It's a conference I hope to attend one year myself.  But most of all, it's the conference I look forward to hearing about afterwards.  Many CF parents like myself wait anxiously to hear what the experts share at the conference.

We most long to hear the answer to one specific question:
When will there be a cure for CF?

Tonight, I looked forward to hearing from several experts on the Cystic Fibrosis Foundation's webinar (both who were at the annual CF conference) who would shared the answer to this question as well as others.

For the first thirty minutes, one expert discussed the current research and clinical trials being done to find a cure.  Much of it was science/biology talk.  Most I understood but some I did not.  The bottom line is there is alot of research being done to fix the cause of Cystic Fibrosis - which is very exciting

But eventually, the moderator asked the simple question we were all dying to hear:
When will there be a cure for CF?

This was the most poignant part of the webinar for me.  This is when I listened most closely and afterward began to tune out that which followed.

The expert basically said this (I can't quote him since I didn't write down what he said verbatim):
In the next decade, there will be greater treatments that will offer a better sense of life.   In the following decade, we will likely find finding simpler therapies that will provide that sense of life.  A cure for CF might not look like something that "just gets rid" of CF.  Instead, a cure for CF is going to be something that significantly helps make life better for those who have it.

Wow, I thought. That is the most honest and clear answer I have ever heard regarding a cure.  There will be no cure, per se, any time soon.  But there is a reason to hope.

My thoughts faded into a dialogue with myself over the idea of a cure.  I tried to tune back into the webinar several times.  But I was stuck on this new idea of what a "cure" means for CF.

When Bennett was born, I would often have people tell me that "a cure is just around the corner" or "we expect to see a cure in my lifetime."  The comments were always said with kindness.  But it always felt so empty.  There was little substance behind these comments because the hope of a cure seems like a pipe dream.  Much research is being done but no scientist yet claims to be near a cure.

And today, hearing this CF expert (a doctor from the University of Alabama) say this felt good.  It was disappointing to hear.  But it felt like something I could finally hang my hat on.

Cures rarely just "happen."  In fact, most diseases are not even cured - but eradicated (such as polio or cholera).  Cancer still exists but often can be treated.  HIV still exists but now offers an almost normal life to those who have it.

When will there be a cure for CF?  I don't know.  Maybe some day.  But the better thing for me to expect for Bennett in the way of the future is a that he will continue to gain ways to manage the disease so that he can live life more fully - and hopefully as long as he would otherwise.

I won't ever stop wanting a cure in every sense of the word.  But, after hearing this expert reply to the simple question, I realized I need to start preparing myself that CF is here to stay - even if only in the background.  Medications, therapies, treatments will help.  We will continue to use them and support research for them.  But will Bennett ever wake up one day without any CF symptoms as though CF never existed?  Sounds like probably not.

And that's ok.  Because life is a gift, for however long we are given it.  And we'll gladly take his life - cure or not. 

I think I can stop asking this question now.


  1. My husband and I watched too. It was very exciting. I dream about the day when the market this new drug to combat all the CTPR's. It's emotional to even think about. Thanks for sharing your view.

  2. Absolutely beautiful post. I love how you've explained what our hope for CF is--not an absolute cure, but treatments and medicine to make this condition easier to live with, and hopefully not as life-threatening. I love your blog and am keeping you and Bennett in my thoughts.

  3. Hi. This is the first time reading your blog. I got your link from fellow CF mom Marchet. Looking forward to getting to know Bennett and your family better through this blog.

    Jenny - mom to Bryce, 2, with CF

  4. This is the first time with a blog - Nana is my name and I guess I have to learn to make blogging my game. My son Glenn Kenneth lived life for 24 years. I say lived, meaning he ran cross country, he went for a year and a half to a wonderful college in Ohio; he had very special friends there and in high school. He wrote a paper published by the "Journal of Adolescent Health Care" 1986;7:134-138. Most of all he was loved & always remembered.'63-'87


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