Why hasn't the number changed?

[Bill]

My wife and I had 2 children with CF, who were diagnosed aroung 1960. At that time we were told that there were approximately 30,000 people with CF. My daughter died at age 18, however my son is still living at age 45 (almost 46). Over the years there have been great strides in medication and treatment of CF'ers, and life expectancy is increasing all the time. When our children were diagnosed, we were told they would never live to enter public school, then life expectancy changed to 10 years, then 20, then 30, and so on. My point is: I'm sure more and more children are being born with CF. Due to better meds and treatment, CF'ers are living longer and longer. Why, after 45 years, are there still only 30,000 people with CF? Anyone know the answer, please try to explain it to an old man. Thanks! Bill

 

[ccflewallen]

you bring up a very interesting point. i'll look into it. if i find out anything, i'll get back with you

Chris Flewallen

 

[anonymous]

Maybe with genetic screening, fewer babies are being born with CF.

 

[Mockingbird]

ha ha, maybe they just made that number up in the first place. =-) You know, like a guestimate. =-)

 

[NoDayButToday]

The anonymous poster who wrote about genetic screening brings up a good point. More and more people are getting genetic screening, and even those who don't screen the embryo before implantation (PGD) can still have amnio. The amnio can tell you whether the baby will be a CFer or not, and the fact is, some people do abort CF babies (I'm not sure how I feel about that). So perhaps the birthrate of CFers has gone down while the life expectancy has gone up, creating a plateau of sorts.

 

[anonymous]

I read an article about a year ago about genetic testing which mentioned a Kaiser study where 75% of expectant parents who were told their child had CF aborted. While this may not be representative of the whole country, it made me think that a significant portion of people now abort when told their baby had CF.

- Kathy (Coll's Mom-Coll is away from computer at the moment).

 

[ihatecf]

This is interesting, and it also brings me to a conclusion that after some decades cf will rule itself out even if a cure wasnt found. So in the year 2030 we will have very few cf cases .

 

[JazzysMom]

Whether you believe in picking/choosing to obort a pregnancy because a "defect" like CF or another illnesses isnt really my concern. What I do see is even more need for prenatal testing, newborn screening etc. Some people say that those of the black community & others dont need to worry since its mostly caucasions. I dont know how that can be said just with the fact there is so much interracial relationships now. My daughter is bi-racial. Her dad is black & I am white. She is a carrier of the gene. She will have to consider that when hooking up with someone & having children. Generations down the line all of this testing, termination, picking & choosing or education alone will make a difference. Will we be able to erradicate CF altogether? I dont know. When I was in high school I used my English class as a way to educate everyone about CF. Not to get the attention for me, but to make them realize that 1 out of my class (averaging between 20-25) could be a carrier. That is the part that needs to be made aware. The more we have intergrated relations the farther the gene will spread, but that can be countered acted by knowledged. Does this make sense to anyone? I know what I want to say in my head, but I am not sure its coming out right!

 

[Bill]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Re: number change. While reading a PTC Therapeutics press release recently, there was a brief mention "About CF". They mentioned that it was a genetic disease affecting approximately 60,000 people worldwide. This is the FIRST mention I've ever heard in over 40 years that the numbers have changed. I should also mention that the FDA has granted PTC124 fast track designation for the treatment of CF and orphan drug designation for the treatment of CF and DMD due to nonsense mutations. Also, the Cystic Fibrosis Foundation Therapeutics, Inc. has awarded PTC $1.7 million for the development of PTC 124 for the treatment of CF due to a nonsense mutation in the cystic. It is also my understanding that they are just now getting CF patients lined up to participate in Phase 2 testing. The press release also estimated that 10% of CF patients have this disease as a consequence of nonsense mutation. Before anyone asks, I know absolutely nothing about "nonsense mutations." If anyone can help there, I would appreciate any info you might have. Bill

 

[WinAce]

That members of other ethnicities don't need to worry about screening is particularly ignorant, not just because of interracial relationships, but because <i>they have common genetic ailments of their own</i> which caucasians get less often. Tay Sachs, Sickle Cell anemia, and so many others that disproportionately affect one group of people, yet are in some cases worse than CF...

 

[anonymous]

Hey, this was so interesting to me and it was killing me to find out some imput on this. My son 6 yr old cfer is sick and had to go to the doctor today, although I read this last week and it has been on my mind, I asked the special needs doctor today what was up with this? He claims that its not a major increase abortions, although there's some cause notevery pregnant women gets tested. He told me that doctors goal in the last 30 years was to detect earlier so that they could treat quicker to increase life expectancy, in turn 30-40 years ago women were having 2-3 children in which had cf, not knowing the chances they would all have it. Now doctors and families are educated to the disease and it has decreased birth rate. meaning you may have 1 child with cf and choose not to go for the 2nd or 3rd child(do not want to take the chance)

I hope this helps because your question really brain picked me. I am going to a family CF Day at Nemours in Forida Nov 5 and will ask again.