Celebrating National Neurofibromatosis Day

Did you know that today, May 17th, is National NF Awareness Day? My guess is unless you know someone affected by this disorder, you probably didn’t. But have no fear, I’ve got your back, and will fill you in on what it is.

What is NF?

Neurofibromatosis, also known as NF, is a genetic disorder that causes tumors (known as neurofibromas) to grow on nerves throughout the body. Half the people who develop it inherit it from a parent, the other half get it as a result of a gene mutation. Neurofibromatosis has three distinct forms, NF1, NF2, Schwannomatosis. It is seen across all ethnicity and genders. There is no cure.

NF is an incredibly complicated disorder which affects everyone differently. Tumors can develop anywhere (including the spine and brain), and while usually benign, can still cause many problems.  These include deafness, blindness, paralysis, severe pain, or in some cases, even death. About half of the children with NF also have learning disabilities and require extra help in school.


 

My journey with neurofibromatosis started when I was diagnosed as a toddler. The earliest memory I have related to NF is when I got my first MRI at age five. About 1/2 through, the medicine they gave me to make me drowsy started to wear off. I had no desire to drink more, and I couldn’t lay still so they sent us on our way. That MRI showed “areas of brightness” on my brain, which thankfully never amounted to anything. As I grew, I developed more cafe au lait spots and some minor neurofibromas. In high school, an MRI revealed that I had multiple tumors wrapped around my spine. In college, I developed a plexiform neurofibroma, which I had removed my senior year. Do to the fact that it also wrapped around internal organs it could not be completely removed. I was told there was a good chance that it would grow again, and unfortunately, it has. With each of my pregnancies I have developed more minor symptoms, but nothing requiring surgery.

Despite all of this, I still consider my case of NF relatively mild. I didn’t have to deal with learning disabilities, and if you look at me, you wouldn’t know I had this disorder. Besides the cafe au lait spots, I have no visible signs of neurofibromatosis.  This could change at any time, so I count my blessings.

Today, I’d like to introduce you to a few of the children in the Metro Detroit Area who are facing this disorder head on.

The scary thing as a parent of a child who has NF is that you really have no idea how it will manifest itself. Just because a parent has a mild case, does not mean their child will too. It’s a huge wait and see game. Having a child with NF means multiple doctor appointments, different therapies, MRIs, EEGs, and more. Monitoring and praying that everything remains stable. Wondering if the tumor growth is going to require chemo and radiation. It means when your child complains of an ache or pain you wonder if it’s just a typical growing pain, or perhaps something worse that requires a trip to the doctor. Having a child with NF means staying strong since you never really know what will be thrown at you.

 

Nic was only 4 months when we first heard the word Neurofibromatosis (NF). Because of NF1, Nic has a lifelong journey that will involve monitoring for the possibility of tumors. Currently, Nic’s biggest issues are related to ADHD, SPD and some Autistic Characteristics which are all related to NF. We have learned to navigate this journey with a positive mind. We take things as they come and just like a sailor adjust its sails for the wind, we adjust our life according to the winds of NF.

 

Hudson is 4.5 years old and was diagnosed with NF1 at 18 months old. He is a happy and social boy who loves cars and playing outside. As part of his NF he has multiple complex tumors, an optic glioma, low muscle tone, and scoliosis. He undergoes MRIs every 6 months as well as many other tests and doctor appointments. When he grows up he wants to be a doctor to help kids and adults, own a red race car, and live next door to his parents.

 

Tycen (pictured with younger brother, Roman) is a great kid! He has NF1, which has caused a large plexiform neurfibroma and bone deformities (so far). He has been in and out of a wheelchair his whole life. He is currently in due to an accidental break at a previous surgery site due to NF. He is a math genius. Even though he is in 7th grade, he takes a high school pre-calculus class and does better than most seniors taking it!  

 

Here is sweet 12-year-old Claire on the day she was discharged from inpatient intense rehab after an open craniotomy in December 2016. She is full of life, laughter and loves her doggy!

If you are out and about in Detroit today, take a look at all the buildings that will be lighting up blue and green to Shine a Light on NF.

Buhl Building, Detroit (May 1-31)
Cobo Center, Detroit
Federal Reserve, Detroit
Fisher Building, Detroit
Ford Field, Detroit
GM Renaissance Center, Detroit
One Detroit Center Monument Sign, Detroit
One Detroit Center, Detroit
One Campus Martius, Detroit
One Woodward, Detroit
The Z, Detroit

**Thank you to Children’s Tumor Foundation for the facts and use of their logo, and to the parents who shared their child’s story.**

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