THE BLOG
05/22/2014 10:22 am ET Updated Jul 22, 2014

Raise Awareness and Ease the Stigma Around Neurofibromatosis

Chris Ryan via Getty Images

It is amazing how two small and insignificant letters, when placed side by side, can and will change your outlook on life dramatically. For example, IF and OF can be relatively harmless but NF is a very different combination.

NF is short for neurofibromatosis, which is a genetic disorder that affects 1 in 2,500 births and causes uncontrolled tumor growth anywhere on or in the body. In 50 percent of cases, NF is inherited from a parent, while the other 50 percent stems from a spontaneous mutation. Not widely known about, NF affects all races, ethnic groups and genders, and what those two little letters signify is a devastatingly debilitating disease that can lead to learning disabilities, speech and emotional issues, disfigurement, deafness, blindness and cancer. With no treatments or cure available, the future is often unknown and scary.

In the past few months I have had the pleasure to meet and get to know numerous children and young adults affected by NF and their families, all committed to helping each other through tough times. Sometimes the symptoms are plainly visible while in other cases they aren't. What is clearly evident is the parental concern -- from the newly diagnosed, to those who have been living with it for decades -- of, "What will happen to my child, and what can I do to fix it?" The commitment to fight for and find the cure is shown by so many, and continued research is key to solving the puzzle; but there is nothing on the horizon just yet.

The battle goes on. In an attempt to highlight the issue on a larger stage, once a year proclamations are made and issued by governors across the U.S. with the aim of raising awareness about NF. Others do their part as well. In one case, a badly disfigured gentleman is driving across the country in an attempt to raise awareness about NF. Wearing a t-shirt that says, "Just Ask," his aim is to lessen the stigma surrounding NF and bringing it more into the mainstream. If you happen to see his converted school bus out and about, follow the directions on his shirt! He, and others, will thank you.

This time of year is filled with the promise of new beginnings and new things. Take a few minutes to learn about NF because it is more than likely you know someone or a family who has it. More importantly, because the more people who know about it, the less likely NF will stay in the shadows.

May is Neurofibromatosis Awareness Month.