Naperville walk combats neurofibromatosis

Neurofibromatosis is a master of the sneak attack.

At any time, anywhere in the body, the disorder could be starting a tumor on the coverings of the sufferer's nerves. Depending on the tumor's location, the sufferer could feel pain, tingling or numbness in the arms or legs, declining motor skills, hearing loss or blindness.

All without warning.

The tumors are noncancerous but persistent, and many require surgery to stop the damage they're causing.

The disorder is considered genetic because it is tied to mutations on specific genes, and about half the sufferers have a family history of neurofibromatosis. Other patients have experienced a genetic mutation, according to Neurofibromatosis Inc., a national nonprofit network serving patients and families.

More than 100,000 Americans suffer from the disorder, the network's website says.

Katie Shepard, a senior at North Central College in Naperville, is one of those 100,000. Diagnosed at 18, she has survived a series of frightening surgeries to come to grips with her disorder. She has regained the confidence lost as neurofibromatosis took hold. And she is preparing to graduate with her eye on her future.

But before the Downs, Ill., native accepts her diploma, she has a statement to make by joining the Great Steps for NF walk on Saturday, June 4, in Naperville. She wants more people to know about neurofibromatosis, and she wants more sufferers to know that with treatment they, too, can look toward the future.

My name is Katie Shepard and it was 20 days after my 18th birthday when I was rocked with the diagnosis of neurofibromatosis type II. After one spine surgery and months of frustration and fear, I finally came to accept the burden that was now on my shoulders.

After a year and a half, I lost the hearing in my left ear and hearing in my right ear was starting to fade. Headaches soon followed and I found myself staring a damaging and scary surgery, in the face. Luckily I found a doctor in Boston who has been exactly what I have needed. His devotion to my health and happiness has resulted in me maintaining the hearing in my right ear and avoiding brain surgery.

In June I am graduating from North Central College with a degree in sociology: criminal justice. I am amazed this is actually happening because I truly believed having NF2 would slow down or stop my life.

Living with NF2 has meant having to negotiate obstacles that I normally would not have to face. I have learned to compensate for the loss of hearing in my left ear. For a long time I felt uncomfortable in social settings and, frankly, embarrassed to ask people to repeat themselves. My self-confidence was shaken and it took patience and understanding to gain back what NF2 had stripped from me.

I have been walking in the Great Steps walk for four years now.

I walk for several different reasons and I walk with many different people. I walk for the friends I've made who also suffer from NF, both type I and type II. I walk for my friends and family who have given me their unwavering support. And I walk for a brighter future for myself.

I walk with friends from North Central, friends from my high school (Tri-Valley High School), and my family. All of the friends and family in my life have given me the strength and courage I have needed to battle this unforgiving disease.

After four years of struggle, tears and small victories, I have learned to enjoy every moment, to cherish the people I love, and to stare the bad in the face and refuse to quit.

The past four years of participating in the Great Steps walk have been wonderful and inspiring. It is truly amazing to watch as the support for NF grows every year, raising more and more money and awareness. Every person battling NF gets that one day to stand up and bask in the company of hundreds of other people going through the same fight.

Four years ago I thought my life was over. Today I realize that, with the help of my family and my friends and those at NF Midwest, my life has barely begun and nothing is really out of reach … even with a future as uncertain and unpredictable as mine.

If you go

If you go

What: Great Steps for NF

Why: Proceeds support Neurofibromatosis Midwest

When: Check-in at 8:30 a.m. Saturday, June 4; walk begins at 10 a.m.

Where: Riverwalk Grand Pavillion west of Centennial Beach, 500 W. Jackson Ave., Naperville

Cost: $20 in advance, $25 at the walk; fundraising encouraged

Info: nfmidwest.org