Friday, May 7, 2010

Un-Freaky Friday

If someone told you, your whole life, that the grass was blue and the sky was green, you would believe it, because you wouldn't know any different, right? Well that would be correct until someone came up to you and said "The Sky is really Blue, not green." You would start to question everything you have been told.

Yesterday Neurofibromatosis was featured on a top talk show that reaches millions of viewers, worldwide. Oprah has never been a favorite of mine. I feel she selects stories more to gain popularity than to spread awareness.

Mentioning "The Elephant Man Disease" and Neurofibromatosis, is not only "Offensive" IT'S WRONG!

If had never heard of Neurofibromatosis before, and sat and watched Oprah's show, I would be led to believe 1) That ALL people with NF look the way Ana does (bless her heart) 2) NF is only diagnosed through a genetic connection and 3) NF is related to the "Elephant Man Disease"

If someone -- especially someone as well known as Oprah is going to cover "Living with Neurofibromatosis", what they really need to do is get a variety of guests and disclose the true facts of life with NF.

Hey Oprah, did you know that half of the 100,000 people living in JUST the USA with Neurofibromatosis, got diagnosed through a "Spontaneous Mutation"?

Did you also know that Neurofibromatosis is HIGHLY variable, affecting those diagnosed in MANY ways. With some people, you would never know they have NF, others are affected like the young woman on your show....with many many in between.

Lastly, Joseph Merrick had Proteus Syndrome, deforming and twisting his body, making him know as 'The Elephant Man'. If you and your producers had done proper research, you would have learned, just by 'googling' Neurofibromatosis, that it is NOT that same condition Joseph suffered from.

There is so much more the media can do to help spread the word and educate the world. I find it sad when NF families reach out to the media, only to have no response, because their case won't raise the ratings. But what the media fails to realize, is that, if they did a show, showing everyday NF families, it would not only boost awareness, it would in fact be a highly rated topic!


  1. you tell them babe! . I totally agree with you. <3

  2. Maybe a lawsuit should be filed on Oprah, for discrimination calling those with NF by a vulgar term "Elephant Man Disease". "Elephant Man Disease" is NOT a proper term that should be used in any context, even for Proteus Syndrome. Shame on Oprah, the show producers, and the show researchers for such a complete lack of information and blatant MISinformaton. Nowadays, knowledge is a click away, you just have to seek it. Go Kristi! :)

  3. That is just plain laziness for them not to have checked this out correctly!
    My hubby is really unimpressed (I just told him) and what he said about Oprah isn't polite.