Oprah and Neurofibromatosis

It's been a LONG time coming, but I wanted to go ahead and address the whole Oprah uproar that was caused by Oprah referring to Neurofibromatosis as the Elephant Man Disease.  Let me emphasize REFERRED TO NF as the Elephant Man Disease.

Last year, when I wrote about the misinformation and lack of complete information regarding Neurofibromatosis on the Oprah Show, I... like a lot of you was upset that FINALLY NF was being featured on a top rated talk show and it failed miserable to get the job done in a way that educated and informed. Read blog post here

It was a "freak show".  I am in no way calling Ana Rodarte a freak...the opposite in fact.  Ana bravely went on the Oprah show to help spread awareness about her disorder.  She showed the world that she was not afraid of the snickers and stares...This woman is Thriving with Neurofibromatosis!

Oprah does A LOT of good...Don't get me wrong.  But, she had the opportunity to not just talk about Ana's disfigurement....(because as we all know, NF affects everyone differently and Ana's case is actually a rare.)  Oprah had a HUGE chance to accurately and respectively educate the world about a disorder (not an illness or disease)  The entire segment took less time, than it does for me to take a shower. (a quick shower)

The reason I am bringing up Oprah again is because she starts her new show on OWN this week, and I wanted to put myself out there, to maybe catch her attention.  I signed up for her "Life Class", in hopes of adopting some her her life lessons.

When I watch Oprah, I am in Awe.  Your ideal "rags-to-riches" fairy tale.  She just amazes me with how she overcame a very abusive past, and went on to be one of the most talked about people in the world.

"Doing the best at this moment puts you in the best place for the next moment."-Oprah 

She has so much good to say, and when she says it, it's in such a way, that inspires so many people.  She could do Neurofibromatosis so much good, if she was willing to devote an entire show to disorders that need to be talked about.  There are MANY disorders out there, not just NF that are serious and potentially deadly, but don't get the airtime, like breast cancer, muscular dystrophy, diabetes etc.

I can't even type in Neurofibromatosis in my blog without the spell checker highlighting it for possible misspelling.  NF needs to be talked about.  Not in a way that "shows off" our tumors, or disfigurements...But in a way that informs and helps people to understand the disorder.

I have e-mailed countless TV shows, Talk Shows, Radio Programs, and have yet to find anyone interested enough. (besides a few small town productions) 

Dear Oprah,

I am excited to be a part of your new journey, and the Life Class program!  I am a woman, living (and thriving) with a condition called Neurofibromatosis.  It's the same condition that Ana Rodarte has, the young woman, that you featured on your show back in 2010.

While I was excited and happy that FINALLY, NF was going to be featured on your show, I was also let down, by the lack of information included in your NF segment.

I know shows have to be cut and edited, but this was a serious misrepresentation about the disorder that affects more than 1 in every 2500 births each year.

You talk so much about living your best life.  Fulfilling your potential and dreaming your dreams.  Oprah...MY dream is to accurately, respectfully and completely, represent my family and friends, who suffer with this debilitating disorder.

Your new show is the perfect platform to do so.

"Do the one thing you think you cannot do. Fail at it. Try again. Do better the second time. The only people who never tumble are those who never mount the high wire. This is your moment. Own it. "
Oprah Winfrey 

This is one of my favorite quotes from you.  I am mounting my wires high, and expecting to succeed!  I OWN every moment I live....and I am ready to talk about NF, anytime you are.

Kristi