Living to a Different Drum
I never wanted to let my “disabilities” be the cause of an excuse to not be able to do something. But as I've become older, I've realized that there are times when it is necessary to speak up and let it be known why I can't do certain things, and that talking about it isn't a crutch, or an excuse, just a way to be better understood.
I was diagnosed with Neurofibromatosis Type One when I was about two years old. There are two main types of Neurofibromatosis: Type I and Type II, but I'll refer to them as NF1 and NF2.
NF 1 occurs in 1:3,000 births and is characterized by having two or more of the following symptoms: six or more “café au lait” spots on the body, small pea-sized bumps called neurofibromas on the skin but also larger areas on the skin called 'plexiform neurofibromas'. There may also be some freckling under the arms and/or in the groin area, begin tumors on the brain and spine, Lisch nodules- which are pigmented bumps on the eye's iris, some bone differences such as bowed legs, and small tumors on the optic nerve that may or may not affect vision. Café au lait spots, Lisch nodules and spinal and brain tumors are the most common signs of NF1. 50% of those with Nf1 have various forms and degrees of learning disabilities.
Symptoms of NF1 are wide ranging; not everyone will experience all symptoms in the same way or to the same degree. The most common symptoms of NF1 are: possible vision impairment/ blindness, speech impairments, café au lait spots or tumors occurring anywhere on the body, scoliosis, digestive issues, seizures, headaches, brain tumors, brain blood vessel defects, learning disabilities, mental retardation, itching, over sized head, high blood pressure, muscle problems (such as fine tune motor skills), freckling, early or delayed puberty, false joints, bone deformities, and increased risk for different types of cancers, although this usually isn't due to tumors, as those tumors are very rarely cancerous.