The word "cure" in the Cystic Fibrosis community is, to say the very least, loaded.
When the gene for CF was discovered in 1989, overzealous scientists predicted the cure would be found within five to ten years. I've spoken to parents of kids who were diagnosed 15 years ago, and were told by their doctors not to worry, they'd have the cure by the kiddo's fifth birthday.
From my very humble CF research, it's clear that scientists, docs, drug companies and even parents have casually used the word 'cure' without thinking about the implications of it not happening. I'm guilty. Big time guilty.
Today was our CF Education day at Children's Hospital. They discussed the new drugs and treatments in the pipeline but our CF expert was very careful never use the "c" word. She said, as a researcher, she has become somewhat bitter because of the many promised cure-alls, like fish oil and curcumin, and then the tragic early research on gene therapy that resulted in the death of a CF patient.
I am quick to tell everyone that the cure is coming. That hopefully before we have the "talk" with Froggy, we will be able to assure her a long and healthy life. As a mom, the "cure" is too tempting, not to wish for, pray for, and sometimes expect.
Realistically, I understand that gene therapy is not anywhere near curing anyone. And because there are thousands of strains of CF, every patient is different, therefore, every patient responds differently to treatments. I don't know if there will be a pill in Froggy's lifetime that eliminates all symptoms of CF. Even if the pulmonary aspect is solved, Froggy may still have pancreatic insufficiency, and the likelihood of CF-related diabetes.
This keeps me up at night. And as difficult as it is to read all the articles, and attend forums, as Froggy's advocate and Mama, it's necessary. I understand the danger in promoting the concept of a cure-all, for a very complicated disease. And I know that when articles suggest a cure, even if it's for 2% of the CF population, it could affect the funding for the necessary research for the other 98% of people with CF whose genetic type was not cured.
However, I do believe that Froggy will live to 100. With preventative care, new inhaled antibiotics, and drugs that can open an alternative chloride channel, I think Froggy will have the privilege of growing old, and wrinkly and cranky, like the rest of us.
I hope I've never offended anyone when I speak so casually about the cure. It's the mama in me that believes that her kiddo is perfect, and brilliant, talented, and special, and it's the mama who believes that there HAS to be a cure. Because the alternative is unthinkable.
8 comments:
You put into words everything I am feeling and can't say. Thank you! Know that I am up at night too. You are not alone.
KHJ
Thanks KHJ! That's one of the beautiful aspects of the CF education days. We meet other moms and dads who know exactly how we feel. If anything...we are not alone.
This is something I've given a lot of thought to, as well. When I do Great Strides fundraisers I say things like "Help us find a cure." But, when it comes down to it, I don't really beleive there will be one. If there was one to be had, it would have been found by now. I'm not a scientist by any means, but, I question whether any genetic contiditons can be "cured."
Here's what I do beleive, and what I try to explain when someone directly asks me if I think there will be a cure. I beleive there will be medicines and therapies that will alleviate some of the symptoms of cf. I beleive that the qualitiy of the medicines we use now will improve and continue to lengthen the lifespan of Cf patients. I beleive that CF can become a "controllable" disease like diabetes, not the unpredictable, fatal disease it is today. I beleive that Emily will have children. I beleive that she will see those children have children, long after I am gone from this world. I beleive that we need to do everything in our power to help these things happen, and that the best way to do that is to support the CFF.
But, this obviously doesn't fit on my Great Strides post cards, so, I stick to what peopls can understand: Help make CF stand for Cure Found.
It's just easier.
Tami
Mom to Emily 2, w/cf
Well said. When I went to the CF Education day at UVA, the physician from CFF used the term "guardedly optimistic." I don't know if you heard the same person or not, but he gave us a paper that showed the drugs in the pipeline, and the one for the "cure" was still in Stage 1, and he said it's a long way off.
Oooh...good topic. That's something I brought up when I was interviewing Dr. Collins. I asked him why researchers keep telling us "a cure within 10 years," which they've been saying since the 70s.
The interview was WONDERFUL. I got so much great material that I'm having quite a time sorting through it all. Believe me when I say he had some very exciting things to share.
Blessings to you and your Froggy!
beautifully put. praying for a movement in the right direction no matter what kind. xoxo jcn
My friend's husband works in gene therapy), and she's a neurobiologist who works with the final stages of clinical trials of drugs before they're released for human trials and/or consumption (nice to have such brainy friends!). We were talking about this sort of thing recently, and she said the field of drugs-related gene therapy is on the verge of a major breaktrough. She said the entire industry can feel it, like it's a collective buzz that's brewing everyone can sense, just waiting for it to explode.
She says something's coming. Something that has the understanding and of how drugs can help the human DNA repair itself, and has the capability to put this understanding into practice. They can feel it. They know it. She also explained that it takes a good 15 years for a drug to go from idea to human use, so it's literally almost a million to one shot to make it there...but that one-in-a-million is about to have its turn.
So while it may take another decade (or two), it's coming. It will be here for Froggy one of these days. Like my brainy friend says, 'You never know when the next penicillin will be discovered.'
Hang in there, and keep the faith.
XOXOXOXO
I was 16 when they discovered the gene in 1989 and there were reports in the general news media of a cure within the next decade. I cut out the first "real" article I read about it (it was in a Newsweek). I remember telling my mother at the time that mass media was prone to taking complex nuanced issues-particularly in regards to scientific issues-and distilling them down into simplified overly broad brush strokes.
I don't think you need to apologize for using language that may in the end be imprecise or for the feelings you have regarding your daughter which give rise to this. As a mere blog reader it seems like you live and die for Froggy and I think that will go a long way in helping her get to reach that old age.
As a cf'er who won't benefit from any cure that is found at this point, I can honestly say I will be just as thrilled if that cure comes within the next five years as I would have been had it occurred when I was young enough to benefit.
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