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While neurofibromatosis tumors are usually benign, they can pose health risks. Some tumors can lead to disfigurement. Growths on or near the spinal cord and surrounding nerves can cause to paralysis. In about 10% of cases, these tumors become malignant cancers. For patients whose tumors pose serious health risks, early detection is key.
What are the types of neurofibromatosis?
Neurofibromatosis itself is actually a collection of three genetic disorders. Each disorder can be inherited from a parent or be a new, random mutation that exists in every cell’s DNA. In both cases the condition can be passed down to the patient’s children.
Approximately 100,000 Americans have an NF disorder. The most diagnosed type, NF1, affects around 1 out of every 3,500 births. Most NF1 patients have mild to moderate symptoms, but it is a progressive disorder that can lead to disfigurement, skeletal abnormalities and learning disabilities.
NF2 is much rarer than NF1 and is characterized by tumors on the vestibular nerve.
NF2 brings an increased risk of other types of nervous system tumors and may cause severe vision problems.
Schwannomatosis is also very rare. It is defined by the presence of multiple schwannomas (tumors that grow around nerves without involving the skin or other organs) everywhere in the body except on the vestibular nerve.
What a re the risk factors for neurofibromatosis?
Neurofibromatosis is caused by one of three genetic mutations that are either inherited from a parent or that seem to develop randomly in an individual. People with one of these mutations will develop the disorder. There are no steps that can prevent the disease.
Children with one parent with neurofibromatosis have a 50% chance of inheriting the gene and developing the disease. Individuals with the disease should get genetic counseling for themselves and for their children.
Learn more about neurofibromatosis:
Neurofibromatosis is a genetic condition that runs in families. If you have neurofibromatosis, or if you have a family history of the disease, we recommend genetic counseling. Visit our genetic testing page to learn more.
Why choose MD Anderson for your neurofibromatosis treatment?
At MD Anderson we offer customized neurofibromatosis care aimed to help patients live full, active lives. We utilize the most advanced treatments and techniques that offer the best possible outcomes for both pediatric and adult patients.Comprehensive care
Because neurofibromatosis is rare, most physicians have little experience treating it. MD Anderson has one of the largest comprehensive neurofibromatosis programs in the nation. This can make a difference in you or your child's care and quality of life.
As part of a comprehensive cancer center, our neurofibromatosis program can offer the full range of services neurofibromatosis patients may need. We partner with oncologists and surgeons, including teams in neuro-oncology and sarcoma care, to offer the most up-to-date therapies and procedures. We also work with reconstructive surgeons to remove skin tumors and tumors around the eye. And we provide a comprehensive academic/school assessment and intervention program for children with NF and learning disabilities - the first such program in the world.
We appreciate everything, we focus on what matters, and we don't take anything for granted.
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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