Today’s New York Times has an interesting article on Louise Benge, a woman who — along with her two sisters and two brothers — suffered for years from an unknown debilitating disorder that left doctors baffled.
Many of those in the NF community may see parallels to their own struggles to find answers for themselves or loved ones. One of the things we work to do at the Foundation is inform the medical community about NF, diagnostic criteria, and management options, as well as clinics where they can refer patients for best care. (Those looking for a clinician in their area can visit our Find a Doctor section.)
But an even more important takeaway from the article is how the study of Ms. Benge’s disorder provided scientists with important information that will inform research into treatments for heart disease, osteoporosis and other maladies which affect many more people. This is true of research into neurofibromatosis as well. From cancer to bone dysplasia, learning disabilities, deafness, blindness, pain, and the many other manifestations of NF, research the Foundation funds is unlocking critical information that will improve the lives of many individuals beyond those affected by the disorder.
That’s not to say we’ve lost our focus on improving the life of those living with NF, that is our mission and will be until we find a cure, but it is an important concept to keep in mind as we promote, advocate, and work to advance NF research.
[Times Article]
