Neurofibromatosis survivor: Snapshots from an MD Anderson patient who doesn’t have cancer

I first became an MD Anderson patient more than 28 years ago, at age 4. But, I’ve never had cancer.

I was born with a genetic disorder called neurofibromatosis. Like cancer, it has no cure. Unlike cancer, remission is not possible, as it is an inherited disease. But just knowing that MD Anderson does such great work beyond cancer is important. Its doctors, nurses and other medical professionals have saved my life repeatedly.

Living with neurofibromatosis: what it’s like

Neurofibromatosis tends to be different than cancer, in that it progressively impacts every aspect of the body — inside and out — for life. It also affects each person in vastly different ways. Bone deformities, learning disabilities and tumors, for example, are typical, but not necessarily universal.

In my case, I’ve had six surgeries for tumors so far. Three of those were considered major surgeries, and two were life-threatening. As a child, I took daily growth hormone shots for a decade — otherwise, I would still be the height of a kindergartner. I currently take 16 different medications, with some for my eyes, heart and stomach. I have physical limitations and must always wear a brace on my right leg. I have an ever-growing number of neurofibromas (basically little bumps) on my skin. I’m dyslexic.

Almost everything about my experience has been unusual, even for someone with neurofibromatosis. I’m at MD Anderson for blood draws, scans and checkups at least half a dozen times a year — and that’s when I can get multiple appointments on one day and when I’m not having surgery.

Things to remember about neurofibromatosis — and other diseases and disorders

Just as many cancer patients do, we neurofibromatosis patients sometimes deal with chronic pain and invisible disabilities. I’ve had very few pain-free days. My tolerance has grown since the early 1990s, so migraines or intense leg pains don’t always faze me.

Because of the many medications I’m already taking, sometimes I try to “tough it out.” But then, I remember that taking action will make me feel much better, so I do.

We all need to be reminded that pain doesn’t have to be normal when prescriptions or over-the-counter medications can help alleviate it. We also need to be reminded that we don’t know how someone else feels or what they are going through, unless they tell us.

Beating the odds, despite a neurofibromatosis diagnosis

Because of my ongoing medical problems, people have sometimes doubted me. Some even told me that getting a doctorate and becoming a professor would be impossible, because getting even a basic college degree might be too hard for me.

Yet, here I am, a 6’5” professor at the University of Houston and a published author with a Ph.D. in history. (I will be forever grateful to MD Anderson’s Children’s Art Project for providing $23,000 in scholarships to help pay for my four college degrees.)

The lesson here is that at the end of the day, you are your own best advocate. So, always stand up for yourself, always take chances, and you, too, can achieve the impossible.

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