This is not disturbing to me. Keep in mind that you watched only what the news channel thought was interesting to show. Of course those parents and doctor are going to have discussions about the childs health and longevity that go well beyond what you saw in the news.
In MN, the average life span is 47. Is that true for eveyone? Of course not, there are always going to be exceptions depending on personal reaction to medication. The doctors here do not treat cf as no big deal. They make sure you know the full scope of what you are dealing with. They also preach a lot more than just taking vitamins and enzymes. Without chest therapy, nobody is going to live a long life.
I ask my doctor about once a year what he thinks my odds are, and he keeps reminging me that yes, I will most probably reach my 70s or higher - as long as I keep my health up and don't run into problems with my lungs. Of course I know that any day I could take a sharp turn and not recover, but I'm not going to start counting the days to 36 or even 47. And yes, I have pseudo and mycrobacterium.
As far as new parents? I think it's far better for the child and parents to have the hope of a long life span. When I was diagonsed, life span was 10 years (in MN). Of course I'm way past that, but it was very hard for all of my family to "count the years". While we should always love and care for our children as a gift every day, it's stressful enough to deal with a sick child, much less the stress that they could go any day.
Growing up as a "ticking time bomb" child, I can tell you that it is not fun. I would rather have grown up with hope and assumption of a normal, long life (which I have so far) than the anger and embarrassement of 1. being told I was dying 2. running into classmates and community that was shocked that I was still alive (as early as middle school). As a child, this is something that is hard to cope or know how to deal with. CF children are strong, independant and giving people, but I think we assume they can handle more than they should. To think that life span information only affects the parents is wrong.
Is death a reality? To be honest, I'm not so sure anymore. Death is a natural end to life, and yes, for us cf is likely the main cause. But to grow up with the repeated "you have cf, so you are going to die young" is getting outdated, and is a terrible stigma to grow up with. There is a reason the life span continues to raise, and I think we need to stop thinking that 36 or even 47 is equal to 90 for a normal person. Granted it may feel like that, but keep in mind that a newborn has 20 to 30 years on us. There may not be a cure tomorrow, but look how far we've come just in the last 20 years! Honestly, there may never be a cure, but if medication and therapy continues to improve, a cure won't be our only chance of survival.
Ok, I'm rambling, so I'll get back to my point: For this area, with so many examples of patients living long lives, I do not feel it was disturbing to say that to the parents. I can see how it would seem misleading to other families in other states, or make some bitter because that was not the case for their children, but that was the choice of the tv station.
Instead of being mad at the doctors, call the station and let them know that if they cover stories like these, they need to follow up that this is not the norm. I agree that the last thing we need is the general public thinking that cf is no big deal just because we are not dying young anymore.
--Wallflower, 34 w/cf
diagnosed at 2yrs on a Colorado army base
MN clinic patient since 5years old
