NF Advocacy

Even though I am a librarian, whenever I see the initials for NonFiction, my brain reads the letters “NF” as “NeuroFibromatosis.” As a member of many writing groups, I often see posts about new NF books, and my heart does a little leap, hoping that more books about the genetic condition will soon be available. But in the writing world, NF always means NonFiction.

As a mom of a son with NF, Neurofibromatosis will always be my first thought after seeing those initials. I am an NF advocate because Neurofibromatosis needs more awareness.

Why should people learn about a condition that affects 1 in 2500?  Because those numbers show that it is not rare. I live in a small community, and I know six people in our area with NF.

Also, because it took more than three years for my son to be diagnosed. The signs were there but his doctors didn’t recognize them for what they were. (Even though I kept asking, “Why is he getting these light brown spots on his skin?” at every appointment.) He had a lot of appointments. Between physicals, ear infections, and two ER visits, plenty of doctors saw him. Someone should have caught it sooner.

He also had extra teachers, but the signs were subtle, and the spots were mostly covered by clothing. Besides, they looked like birthmarks.

My son needed the extra teachers because his educational development wasn’t typical. He was clearly brilliant, learning his colors and how to count to twenty before age two. But of the fifty words he knew, most were those colors and numbers. He enjoyed talking, but he didn’t seem to understand its purpose. He would say “cheese” whenever he saw a camera or his favorite food, but never to communicate that he wanted either.

Once the diagnosis was made, we were given explanations for his quirkiness. He processes information differently than typical children. With help, many of his weaknesses (like speaking) became strengths. And the medical intervention we were led to after diagnosis has been crucial at keeping his persistent NF tumors under control.

As more people become aware of NF, more people will be led to the right resources. And hopefully more medical research will lead to better answers.

If you would like to know more about Neurofibromatosis, I would suggest visiting

And to see cute pictures of my son when we were first learning about NF, be sure to read the book we wrote.

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