For most people, it doesn’t mean anything to have the cystic fibrosis. They do not know anything about it, they have no clue. Everyone shivers at the idea of having cancer since it concerns almost every family. Medical researchers are quite active in this domain… Financial interests in play are important... Pharmaceutical companies have «a great deal of hopes» as for the expected earnings thanks to this terrible disease. Whereas it is the complete opposite when dealing with the cystic fibrosis: few concerned families, no public plan for research, researches funds are only collected thanks to solidarity, support and people’s love.
“The virades of the hope” (virades de l’espoir) was thus created by a father, who didn’t know what else to do when facing his daughter’s disease. But this association named “The virades of the hope” (virades de l’espoir) needs to survive. It must be supported by associations, city halls, regional councils...
Thank you so much to all of you who feel concerned without having been directly touched by this disease.
As for the Telethon (this institution of donations), set up to finance researches for those diseases which scare people, I make the wish that one day, the virades of the hope may collect the same amount of money.
Let me remind you that the cystic fibrosis is the first genetic disease in Europe (see previous article on the transmission topic).
How can we ignore it? Or compare this disease with the cancer for which numerous programs of researches are financed (in particular by the league which receives many donations).
The comparisons will not cure our patients as they feel isolated!!! They have a sword of Damocles above the head throughout their life and their fear of a premature death remains.
Is it necessary to be burned to the third degree to feel concerned by the fire??
Our life expectation rises by two months every year. In the case of persons having the cystic fibrosis: they may reach forty, if they are lucky!!! The average age of their death is 27 years old!!! So what are we going to do for them???
