Meet Jackson. At age 1, after a year of café-au-lait spots increasing in both size and number, Jackson was officially diagnosed with NF1. At the same time, an MRI showed a tumor on his optic nerve. The tumor would dissolve on its own, and at age 4, Jackson is currently symptom-free. (source: Cincinnati Children’s Hospital)
Meet Ana. As a toddler, her parents noticed something growing on her face that turned out to be a tumor. Despite multiple surgeries to remove the tumor, it would continue to grow back, each time a little more disfiguring, each time leaving Ana a little more self-conscious. She dropped out of college and struggled to find work, in her mind but perhaps also in reality because of her appearance. By age 24, the tumor had grown to two pounds, completely covering her left eye, causing debilitating headaches, and making it hard to eat. Ultimately, Ana would find a surgeon who was more successful at removing the massive growth. (source: Oprah.com)
Meet Bailey, 18 years old. He has NF2 ( a slightly more serious strain). Over the last eight years, he has had 13 brain or spinal tumor surgeries and spine fusion with rods. (Source: CTF.org)
Meet Jeffrey. An award-winning artist on a mission to change the world through art. he is visually impaired from an optic nerve tumor related to NF. Self-taught as an artist, he first began painting while undergoing chemotherapy at age 12, despite his limited vision, and today has raised $2 million for charity through his art. Not allowing NF to define him or derail him from his life plans, Jeff enjoys a very successful art business and career. Living with low vision, learning disabilities and ADHD are the worst day-to-day obstacles. (CTF.org)
Meet Sheldon. Unaware (though looking back, there were signs; however, not much was yet known about NF in the 60 and 70s) and undiagnosed until after the birth of his son (when it was learned that both had the disorder), Sheldon first noticed something was wrong in the fall of 2000. Simple, recurrent left-hand piano patterns that were quite familiar suddenly became hard to play. Gradually, he would lose a little more feeling and a lot more mobility in his left arm and eventually, his left leg. People wondered if he had suffered a stroke. Discomfort (but not pain) increased in moving his neck and soon breathing became more of an issue. Finally, an MRI revealed the source of all these problems – a tumor, lodged between the top two vertebrae of the spine, which was limiting motion anD worse, putting pressure on the nerve which controls the diaphragm. Seventeen years ago on this very day, Sheldon underwent a lengthy (14 hours) and extremely dangerous surgery to remove the growth (later revealed to be the size of a small lemon). There was risk of paralysis or stroke without much vigil and care by the surgeon. But God was good, and the procedure was successful; the doctor basically invented a new technique (later discussed at national symposiums and notated in medical journals) to chip away at the tumor, which was as hard as a rock (it had been there for at least ten years and maybe even most of the patient’s life). After three months of intense therapy, Sheldon regained full use of all extremities and remains symptom-free to this day, though they could return at anytime.
Neurofibromatosis (NF) is a disorder which is nearly always genetic in origin. It has a 50% chance of being passed on to offspring (riskier than the far more deadly Cystic Fibrosis or Multiple Sclerosis). Although 99% of all growths are benign, the word tumor always strikes a little trepidation because, let’s face it, cancer is one scary monster. Tumors can grow along the optic nerve as mentioned above, the orbital bone (Sheldon’s sister has had two of these removed), the tympanic nerves (ears- more of an NF2 occurrence), anywhere along the spinal column or anywhere connected to the Central Nervous System. And these are just the unseen: growths small and large may appear on the outside of the body, typically on the face or near the waist.
Like snowflakes, no two sufferers exhibit the same symptoms. Some have stunted growth, some have learning disabilities, some never show any signs at all beyond the brown spots.
The Children’s Tumor Foundation is dedicated to the research of this condition; there are places in other countries doing the same. May is NF Awareness month and many places will hold walk-a-thons or other fundraisers now and over the next few months.
If you have questions about my story or NF, please feel free to ask them here and I will do my best to answer. Also, you can visit ctf.org to learn more. Meanwhile, as always, dear reader, support arts, music and the education thereof, study to show yourself approved, and always be kind and helpful to others to the best of your ability.