I’ve known that I have NF for as long as I can remember, having been diagnosed as a very young child at a time when much, much less was known about NF than is known today. Indeed, I was supremely lucky to have been born into a family not only with loving, devoted parents, but in which both my paternal grandparents were physicians. My grandparents jumped on my medical issues from the time I was born, seeking to confirm my NF diagnosis, help my parents, and help me. My parents got involved with what is now the Children’s Tumor Foundation, starting not long after it was founded.
Living with NF hasn’t always been easy, but who says life is supposed to be easy? I was born missing my tibia in my left leg, and that leg was amputated when I was two years old. I broke my arm when I was six, and it never healed properly, leaving me in an orthotic since then. As a young child, what is now a large plexiform neurofibroma started to grow on my face, and it continued to grow throughout adolescence and young adulthood, causing me to appear (significantly) disfigured.
Growing up, my folks always encouraged and supported me, in life, in school, in everything. My loving and brilliant grandmother, suspecting that I might come to resent the decision to have my leg amputated, took Super 8 film so I would be able to see what my leg was like. It is remarkable to watch the old footage of tiny toddler me smiling and waving into the camera, standing on one leg while the other one flopped loosely and uselessly around.
I used to hate, hate, hate when other children stared at my leg or at my disfigurement. I hated being slower and worse at sports than other kids in school. I despised being so different, standing out for my appearance, going to doctor appointment after doctor appointment. That was then.
Now, when kids stare or point, I smile. When they ask questions, I answer in an age-appropriate way. I always hope that parents use an encounter like that as a teachable moment, a chance for kids to learn that difference isn’t terrible or bad or scary. A chance to start to understand that 'I was just born looking this way, like you were born looking like you' and 'Everyone looks different!' I hope that those encounters are small steps to having children treat other children well.
I attended a highly selective college and law school. During and after law school, I had great difficulty finding a job, and there is zero doubt in my mind that my appearance contributed to that difficulty. One lawyer interviewing me had the nerve to ask, ‘What the hell happened to you?’ I didn’t and wouldn’t have mentioned NF; I must have told him that nothing he sees would affect my ability to do the job. Needless to say, I did not get an offer.
Now, about 20 years later, I am a partner in a financial services boutique law firm. I represent major financial institutions and companies in commercial litigation and anti-money laundering compliance. If I was looking for a new job, and some fool asked me 'what the hell happened to you?' I’d have a very different, and I suspect far less polite answer, than I did 20 years ago.
Ken Rudd lives with neurofibromatosis type 1 (NF1) and lives in New York City, where he is a lawyer. He is a member of the Board of Directors of the Children’s Tumor Foundation.