Neurofibromatosis is pronounced neuro-fibroma-tosis and is commonly referred to as NF.
Neurofibromatosis (NF) is an umbrella name for three separate genetic disorders that share a common manifestation - tumour growth in the tissues that surround nerves. NF can result from a spontaneous genetic alteration or is inherited from one or both parents. While most of the tumours are benign, they can occasionally become malignant. Symptom manifestations and their severity vary greatly in all three forms of NF, making each form a distinct and complex genetic disorder. NF is equally prevalent across the world and is not limited by any gender, racial, social or economic boundaries.
There are three types (so far - others are being still being defined). There is no cure, and treatment is usually only recommended when things get really bad. Half the cases are spontaneous mutations, and half are inherited. People with NF have a 50% chance of passing it on to their kids. There's no way to know how someone will be affected, even within the same family. One member could have a severe case, while their sibling has only minor side-effects. NF is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington's Disease combined.
It is NOT "Elephant Man Syndrome". Joseph Merrick probably suffered from Proteus syndrome. There is so much misinformation about this condition out there. Apparently Oprah's show on the subject was full of inaccuracies, and that just sucks.
In other news I joined the pipe/cigar smoker group but not many people are really active there, especially about pipes. I was looking through old post and saw you were on there a bunch and then I learned you were the previous owner of the, at the time, separate pipe group before the merger. Do you still smoke pipes? I couldn't tell, are you still in that group? I am a burgeoning pipe smoker and was looking for some people to really talk pipes and tobacco with but it's not really happening for me but then I learned someone I'm already friends with use to be the group owner. Wow. And you're the owner of the tea group i'm in. You are clearly a more productive person than I am.
Last week was Mental Illness Awareness Week, though I didn't do anything special to celebrate. I was invited to a lunch, but didn't feel up to it when I woke up that day.
As for Oprah, well, for a split second I wanted to say something sarcastic or mocking about you seeming to be surprised that she got health information wrong. But then I thought, no, you seem very nice, and we're not close enough friends for me to do that.
There was a fantastic article in... Time? Newsweek? One of those, about how inaccurate and even dangerous some of the stuff is that gets said on Oprah. It was quite fascinating. But scary when you consider how many people actually rely on her for medical information.