CF

[Guest guest]

Lori, et al.: It saddens me to read a post where a mother of a child or children

with CF or a person with CF assumes that it will ultimately be the cause of

death. Death is a forgone conclusion, and postponing it to an unpredictable

future date is most people's goal. A cure for CF is not in the foreseeable

future, so we have to learn to take whatever is available to give us the best

quality of health possible. CF is an insidious disease and those with the same

mutations can be affected in different ways. Each parent and person must deal

with it within the context of how much it is involved in their health.

Unfortunately, having CF doesn't exclude having other maladies, and no matter

how many time I may raise my hand and asked to be excused, I still have the pain

of osteoarthritis, and must restrict my diet due to hypoglycemia. Now, it's

thyroid problems, and if I keep aging, who knows what will befall me. I said

" goodbye " to most of my hair over twenty years ago. Perhaps at age four I was

blessed, as there was no CFF to tell us that I would die from a disease that

hadn't yet been invented (discovered). My doctors through the years treated the

symptoms, which is what doctors have to do now, over seventy years later. For

some such treatment and regimen work, while for others there are many factors

that influence why it doesn't.

The focus should not be on the ultimate demise of a person with CF, but the

optimism and determination it takes to survive. It takes discipline and a lot of

TLC but not an obsession. Most children with CF become, horrible the thought,

teenagers, and then must learn to take care of themselves. Having goals to focus

on, and knowing you have to take CF along for the ride can put it in

perspective. Remember, walking in front of an SUV can change the whole equation.

Hal

[Guest guest]

Great post and sentiments, Hal. Our doctors here in Denver believe we

are 1-2 drugs away from making CF a completely manageable disease. I

think people focus too often on a cure, when the only way to truly cure

it will be gene therapy, and that solution is several years off, at a

minimum. On the other hand, the pancreatic issue is pretty much

resolved with enzymes and diet (some issues remain, but I'm talking

generalities), and there are several drugs in the works that will

activate different chloride/sodium channels and bypass the defective CH

channel altogether. Personally, I believe one of these drugs will

" pass muster " in the near future, and my daughter will die from

something other than CF. She'll have to be careful, and be on lots of

expensive drugs her whole life, but I truly believe it will happen. A

cure- I'm not convinced I'll see it in my lifetime. I was took enough

science/biology/biochemistry (I was a chemistry major) classes in

college to understand the difficulties involved with gene therapy.

Anyhow, I digress- but thanks for the positive posting, Hal. You are

100% correct with the SUV comment- no one knows how long any of us here

regardless of CF or not, so focusing on the positives is all you can try

to do.

Elias- dad to Soley 1 w/CF and Uriah, 4 no CF

CF

Lori, et al.: It saddens me to read a post where a mother of a child or

children with CF or a person with CF assumes that it will ultimately be

the cause of death. Death is a forgone conclusion, and postponing it to

an unpredictable future date is most people's goal. A cure for CF is not

in the foreseeable future, so we have to learn to take whatever is

available to give us the best quality of health possible. CF is an

insidious disease and those with the same mutations can be affected in

different ways. Each parent and person must deal with it within the

context of how much it is involved in their health. Unfortunately,

having CF doesn't exclude having other maladies, and no matter how many

time I may raise my hand and asked to be excused, I still have the pain

of osteoarthritis, and must restrict my diet due to hypoglycemia. Now,

it's thyroid problems, and if I keep aging, who knows what will befall

me. I said " goodbye " to most of my hair over twenty years ago. Perhaps

at age four I was blessed, as there was no CFF to tell us that I would

die from a disease that hadn't yet been invented (discovered). My

doctors through the years treated the symptoms, which is what doctors

have to do now, over seventy years later. For some such treatment and

regimen work, while for others there are many factors that influence why

it doesn't. The focus should not be on the ultimate demise of a person

with CF, but the optimism and determination it takes to survive. It

takes discipline and a lot of TLC but not an obsession. Most children

with CF become, horrible the thought, teenagers, and then must learn to

take care of themselves. Having goals to focus on, and knowing you have

to take CF along for the ride can put it in perspective. Remember,

walking in front of an SUV can change the whole equation. Hal