Nothing But Hope

[rosesixtyfive]

The posts lately have made me feel a little down. There may not be a cure, but might there not be better medicines that make life more like normal for a longer period of time for our children? I thought this forum was full of people whose parents were told they would not live to be two, eight, twenty, and they have surprassed all that the doctors predicted. Someone told me when Sam was born that I should not allow myself to feel anything but hope for my child. I think parents of CF kids need that sort of blind determination. Does anyone who is older with CFnot feel that things are a little betternow andmight (do we dare to hope)be a little better in five years time and then even more signficantly better in ten years time? Better quality of life? Less infections? More children and adults surpassing expectations? No cure, but maybe a generation of people who are surviving and prolonging the need for transplants.Be gentle, but don't mislead either. You tread on my dreams.rosesixtyfive, mother of Sam, 2 years old, ddf508

 

[242wuu]

After I got over the Shock of Jared's dx, I lived on nothing but the blind faith of a child. I knew with all my heart then, and I still BELEIVE today that we will see a cure for Cf in our lifetime. That was my main source of strength and what got me through.

 

[Printer]

It depends upon your definition of CURE. If you are looking for a "silver bullet" or "magic wand," I doubt it. If you mean improved treatments and meds, you only have to read the newspaper or logon to CFF. When I was dx, at age 47, life expectancy was 18. today it is in the mid 30's and climbing. Many of us are over 60 and at the clinic that I attend, there are 4 CF patients over 70.

Bill

 

[CJPsMom]

One of the women I work with has a daugther whose best friend has CF. They are 18 and she plays lacrosse, is incredibly healthy and doing well. When she was born, they were told that she'd be lucky to see her teenage years.
That was 18 years ago when they told parents the life expectancy was the early teens.
When my son was born in November 2010, the life expectancy was 37. If it's changed from early teens to late 30's in just the last two decades, imagine how much more it will change in the next two decades.
Also, there are some in the field who believe that CFers born today should live well into their 50's & 60's - consistently.
We may not find a cure, but there are many things that haven't been cured that are perfectly livable now, and we have every reason to believe they are working hard at making CF livable.
All we can do is keep their lungs healthy for as long as we can and use the preventative technologies that are available to us now. There is every reason to be positive about what's to come in the CF world.

 

[JENNYC]

There is so very many amazing drugs in the pipeline right now!! To me optimism is the best way to approach it for you and your child. I try to stay positive and keep on top of any new CF developments out there. Hopefully 809 and or 661 will be out in 4 to 5 years and make everything worlds better than it is now.

 

[Mommafirst]

I think being hopeful is important, but I can't do it without also being realistic. There are great new medicines on the horizon. They will help to make this disease more manageable (for some) and help survival rates (for many). But none are a cure. They are medicines with super high price tags, little long term studies, and handfuls of patients that can't take them for one reason or another.

This is not to say that I am not hopeful. I am hopeful that my daughter will stay healthier longer than CF patients of yesterday. I am hopeful that she will be able to live a full life.

But I am realistic in the knowledge that there has NEVER been a CF medicine introduced that has made doctors discontinue other treatments or medicines. They just add on to what they have, as long as it works for your patient. So I am realistic in believing that with all the progress, our kids will still be tied to long treatments and many daily medicines with high costs. To me, a **CURE** would mean no more vest, no more hours of treatments or hundreds of pills.

But I do hope that the needs for IVs and other hospital stays will lessen with the increase of these new meds.

 

[LittleLab4CF]

Don't knock hope. One of Walter Winchell's regrets I hope he carried to his grave was a deliberate concocted sabotage of the first large scale distribution of the original Polio Vaccine in August of 1954. For those unfamiliar with Walter Winchell, he was a very popular Gossipist, his self perception was commentator, and regardless of your politics, religion or surrounding world, everybody felt Winchell was talking to them personally. My parents were amongst the pre vaccine polio paranoids, for good reason. Iron lungs were being delivered by the truck load and America was in the middle of a polio epidemic. Twice I took years off their lives, once with viral meningitis. The next on the heels of the meningitis was encephalitis. Although both diseases were life threatening, polio was really scarey. Imagine the 250,000 children lined up for a life saving vaccine and not only is the vaccine denied, many parents were suddenly devoid of hope, for 3 months until the idiots who stopped his fully vetted vaccine, stood back in full support of the vaccine, Winchell was later pressed for an apology, which he never gave.

I posted in too much detail, what I thought of the future of CF medicine in a similar topic today surrounding the question of when we might see a cure for CF. The hope on my part is about five years for treating the ten most frequent mutations. DF508 mutation, if a similar cure like the one for G551D will affect 66% of CFers, we have 4% with G551D, add in the 8 remaining most common mutations and this covers most CFers including many with two homozygous mutations to be dealt with. The future's so bright, I have to believe that watershed I have predicted will ultimately result in a panecea drug to cure all CFTR gene defects hopefully without extended or lifetime treatment.

 

[hmw]

I don't quite understand... this forum is filled with the people you are looking for, but that doesn't quite seem to be what you are asking for- you are referring to what you've been reading here. Who is treading on your dreams? Those who are dealing with the realities of cf- sickness, disease progression, loss, and post about it? There is plenty of room here for hope and optimism ... and we all need it in our hearts to keep moving forward with any measure of sanity.

However, those struggling and especially those grieving need to feel the support of this community as well. There's a lot that isn't fun that goes with this disease. When people talk about that side of it, it's not to kill the dreams of the new parents or to be steeped in pessimism... It's to find ways to get through the challenges inherent to dealing with a severe chronic disease. And in coming together and finding support through those hard times new optimism can be found as well.

 

[rosesixtyfive]

I would never say that I did not want to hear the problems or the sadness of people who are living with this disease or fighting for their children. I can cope with that. Of course, we are the only ones who can understand each other. What bothered me was when a mother who was coping with the recent diagnosis of her child asked when there would be a cure for this disease. The question and the response made me feel down. No one is treading on my dreams. I was just requesting that no one respond in such a way that would.

 

[hmw]

I looked around for a post asking this question and couldn't find one that had upsetting replies- granted, it may have been obvious but for whatever reason I didn't see it.

But at any rate- anyone that asks "when will there be a cure?" is going to get a HUGE mixed bag of responses, because it's a question that does not have an easy / clear-cut answer. Currently, there is no cure, not even close. Vertex is a HUGE breakthrough, a monumental step in the right direction treating the cause of the disease. Vertex is INCREDIBLE!! So the entire cf community has huge reason to rejoice! But cure? We still have to wait on that. And for full ramifications on even how much vertex will do for the larger population of those with cf? We just don't know. So optimism? Absolutely! An end to the worries we face today? No. So a mixed bag indeed.

While it is completely reasonable to ask for a specific type of response on your own thread if that is what you need from us here, it's not reasonable to expect people to walk on eggshells when they post elsewhere. There is a lot of optimism and triumph and hope out there, in both individual success stories and in what we hope to see come in future years- and we ALL NEED THAT, but there is also a lot of harsh reality out there. So when people ask about a cure, or prognosis, or disease progression, and so on- you'll see responses that reflect that entire spectrum.