sweetninis
New member
how long according to u would it take when they will find cure for cf and no person on the earth will die from cf
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When cf will no longer be an incurable disease
- Thread starter sweetninis
- Start date
M
Mommafirst
Guest
I wish I knew. I wish I could say soon. But medicine moves slowly, and even though there are amzing possibilities in the pipeline, there are NO long term studies that can tell if these meds will work forever or if one might develop an immunity to it or rotten side effects.
I don't want to sound like a pessimist. I just want to be a realist. I anticipate CF will be very different in the coming decades, but I don't anticipate that it will be "cured". JMO.
I don't want to sound like a pessimist. I just want to be a realist. I anticipate CF will be very different in the coming decades, but I don't anticipate that it will be "cured". JMO.
fantasygirl1
New member
Wow, how disappointing to hear all thnegative statements. Hope is the key. The Foundations do help, where would we be without them? It does cost money to get things done. I suggest going to some yearly meetings the doctors usually have with updates with CF. They will tell yo their progress an what they are trying next. My daughter was born right when Pulmozyme became available. She was 5 when she got to use it and she is doing excellent. Some of the problems are those nasty germs, we work so hard to stay away from. Stay away from rotting vegetables. Especially onions. Do that vest. Yeah it itches but you will build a tolerance to it. My daughter is 22 and I can count on my fingers, the number of times she skipped a whole day of treatment. Overkill is better than leaving treatments out. When she was a baby, we did overkill. She is developing diabetes but follow those doctor's advice. She has one of the strong genes and one mutation. She needs her 5 enzymes to digest her food. She is a happy person. No need to see the bad in everything. She loves life and you cant do that unless you want it. We think she is going to live until her 60's and she doesn't have a mild case. If she does skip her treatments, just one day, she always gets sick with an infection. I pray that the negative people can find the joy in life and not worry when they are going to die. We can all get hit by a car tomorrow.
I have always predicted we will cure CF before we truly understand it. I have been working in CF for 36 years and still cannot explain why siblings with the same mutations (nautre) and same "bringing up" (nurture) have vastly differnet experiences with the disease. Why did one die at age 8 and one live to be 40?
Yes, genetic markers will probably give the answer to the above but will it tell the whole story?
I still firmly believe we will have a cure before I retire in 10.5 years. Yes that cure may not cure someone who already has lung damage, it may only halt the disease in its tracks, but I do belive we will something to offer either in utero or immediately after birth to never let CF lung and gut damage occur in the first place. When I started 36 years ago I never dreamed I would even be able to dream this much less have it be a real possibility.
Yes, genetic markers will probably give the answer to the above but will it tell the whole story?
I still firmly believe we will have a cure before I retire in 10.5 years. Yes that cure may not cure someone who already has lung damage, it may only halt the disease in its tracks, but I do belive we will something to offer either in utero or immediately after birth to never let CF lung and gut damage occur in the first place. When I started 36 years ago I never dreamed I would even be able to dream this much less have it be a real possibility.
i pray for a cure every night and when i see my son suffer. im not an optimist. never have been. and in my honest opinion no i dont think there will be a cure. and the only reason i believe that is because the money is in the meds for cf not the cure for cf. insurance, docs, pharm, and anyone else included in that rehlm wont make a lot of money if there is a cure. they make their money in treating cf. not curing it.
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Elizabeth
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Elizabeth
A
Allansarmy
Guest
i pray for a cure every night and when i see my son suffer. im not an optimist. never have been. and in my honest opinion no i dont think there will be a cure. and the only reason i believe that is because the money is in the meds for cf not the cure for cf. insurance, docs, pharm, and anyone else included in that rehlm wont make a lot of money if there is a cure. they make their money in treating cf. not curing it.
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Elizabeth
I use to feel that way, but I still believe there is good in the world. I forsee a group of scientist or maybe even one scientist that finds the actual cure. Does the CF disease make money for companies? Sure you bet. But, it is no where near as popular as cancer or diabetes. So in a nut shell, I think most doctors would love to have that on their resume or maybe even win a nobel prize for the person that cured Cystic Fibrosis.