I often hesitate to admit that I have Neurofibromatosis-Type-One (NF-1) because people's attitudes towards me having it have caused great emotional pain that has often been harder to live with than any pain caused by a neurofibroma. Meanwhile, it is important for me to mention the condition because not only has it shaped my art-work, but I owe the community of those diagnosed with NF-1 as well as NF-2, any awareness that can be raised. Joseph Merrick, the man associated with Elephant Man's Disease (often confused with NF) used to sign his letters with this poem by Isaac Watts:
With NF-1, a consequence is a minimum of six cafe-au-lait spots. The size of the spots are from 1/4 inch (5mm) in children and 3/4" (15mm) in adults to several inches in diameter or larger. As a child these spots came about before the age of two, but as I went through elementary school they became a source of shame. Once, I filled the family bathtub with very hot water, then poured in an entire can of Hill's Brothers Coffee into it; hoping to take a coffee-bath to stain my skin to match my spots. I had put water proof band-aids around every spot on my body in an effort to match them to what I hoped would be my coffee stained skin. It was not until I saw the coffee grounds at the bottom of the tub that I realized I should have used instant coffee --if I wanted to color the water-- so, the following day, I tried to do it with a jar of Taster's Choice Instant Coffee. These experiments were not appreciated by my parents, but that as they say, is another story. The presence of multiple neurofibromas (skin bumps) is an important diagnostic sign of NF. The number of these varies widely among affected individuals from only a few to thousands. (I have thousands.)
These growths are comprised of cells that surround the nerves. They may occur anywhere in the body where there is a nerve. On the skin they appear as bumps. Often they begin to appear at adolescence, such as the case was with me, and because this can be a particularly trying time under 'normal' circumstances, the growths popping up all over me during this time of my life, made me isolate myself, due to the ridicule and teasing of classmates. Ridicule and teasing seem like small consequences now, but, at the time, the emotional (and often physical) pain was severe and frightening; especially since nobody in my family had this condition and very little was known about it then.
I was aghast and she could see it immediately for she apologized, saying that her young daughter had just been diagnosed with NF and that up until the time she saw me walking up the street, she thought her daughter would be destined to a life of isolation and not a carefree one like I appeared to have. She went on to say that I must be so pleased to know about Chromosome #17 and how it had now been identified as the chromosome which when mutated caused NF. These were Pre-Internet days and I did not know this, nor did my general practitioner.
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