Of the 200+ articles I found on the web, my trusty Google News search suggests that only eight actually named NF as the cause of the tumor. 8. Out of more than 220. The rest merely referred to a “rare genetic disorder.” What’s more concerning is this: the CEO of the hospital where the operation took place told CNN that it was the same disease as that of “The Elephant Man.” Except the latest research suggests that Joseph Merrick, popularly known as “The Elephant Man,” is suspected of having Proteus Syndrome – a completely unrelated disease. If the medical community doesn’t even understand NF, and the press doesn’t report on it when provided an opportunity to educate, it’s no wonder that so few people have ever heard of the condition.
NF1 is the most common neurological disorder caused by a single gene, occurring in one in every 3,000 births. According to the Children’s Tumor Foundation, NF1, and the much rarer NF2 and Schwannomatosis (collectively, the three are the “Neurofibromatoses”) affect more than two million people worldwide, making NF “more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined.” Yet I’m almost certain you’ve at least heard of each of the other three conditions, and nearly as certain that you likely haven’t heard of NF.
In fairness, those three conditions have significantly worse prognoses than NF, and complications are generally much more severe. But I still find it at least somewhat astounding that outside of the medical profession, relatively few people have heard of this disorder.
No, I don’t want the condition to be defined by a worst-case scenario that’s not likely to happen in the US, but – and I hate to sound like a shill here – just as other conditions can benefit from research funding and support organizations, so too can the NF foundations like the Children’s Tumor Foundation and NF, Inc. I hate to put it this way, but frankly, we could use the publicity.
Call it gawking, rubber-necking, education or research – Humans by nature are curious. We seek to understand, to compare, to understand often so we can be relieved or so we can help prevent it from affecting ourselves or one of our loved ones. This phenomenon can lead to two of the most important actions – scientific research and funding. The latter is necessary to perform the former and is the easiest thing that the general public can do.
I’m not trying to turn this into a circus freak show, but I can’t help wondering – doesn’t it behoove our community to educate the general public during those rare occasions when we draw their attention?