Topics for CF Trivia

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No matter which CF support list or lists you subscribe to, two topics

seem to come up for discussion frequently, how many people have CF, and

what is the level of severity? Another infrequent topic concerns what

groups, ethnic or otherwise, are likely to be plagued with the disease.

The latter topic will be clarified when the statistics come in from the

Fiji Islands. The CFF supposedly is the source for the number of people

in the States with CF. Perhaps their statistics could be graded on the

basis that when the population of the States was 200 million, they

claimed there were approximately 30,000 people with CF. Now that the

population is approaching 300 million, their literature claims there is

approximately 30,000 people in the States with CF. So much for their

statistics. Having attended three different CF centers, from my

experience, two of them would not release the number of patients to the

CFF. Only when they wanted the pittance the CFF would give them for an

" adult " center, would the numbers be given. Some centers readily give

information, some do not. Some centers for various reasons are not

" certified " by the CFF, so their numbers would not be included. The

statistics are often based on financial and political factors, just as

the fact that there are many of us surviving well into the 60's and 70's

is rarely included in their literature. They would not select me as one

of their poster boys! As for various ethnic groups being inflicted by

CF, the poor are rarely tested, I know there are Asians with the

disease, and how many Fiji Islanders have been tested? The decision

makers at the CFF have a vested interest in what they report, and by

checking out their salaries you can get an idea why. No doubt the

organization does good, but for those of us with long memories, how

often have they announced that a cure is at hand? Remember the original

CFF news releases concerning D'Nase? Hal