I am almost positive that the CDC is not being notified of these cases. I am not sure who is keeping records on the numbers of cases, but in a recent Redbook article the number per year was only about 3000. Because of privacy regulations, my mom would be fired even for telling me that these cases exist, much less for alerting the media. It wouldn't do any good to tell anyone anyway when most of the patients have died and the charts do not show the real diagnosis. I think it is time that we demand that statistics on NF, HIV, Hepatitis, and other infectious diseases be made public.
Hospitals are afraid of losing business if the public becomes aware of the truth.
But we need the truth. Our health care professionals need the truth. If anyone has any idea how this goal may be accomplished, I would like to know. I am dedicated to passing the information on this site along to others, especially the doctors I visit. But as long as cases of NF are disguised and covered up, it will continue to be a mysterious, misunderstood, and misdiagnosed disease.