The Elephant Man

The very first time I looked up the word 'Neurofibromatosis' was when I was a teenager.  I was curious one day, and got my encyclopedia out.  I had this fear inside me, as I read the description.  My brother Mike and my mom definitely had this disorder...While I....Would not get diagnosed until many years later.

I remember the encyclopedia having the picture above in the description and feeling horrible for my mom and brother...Wondering if they would soon look like 'The Elephant Man'.  I slammed the book shut....Never to look up NF again...That is, until my 'official' diagnosis in 2007.

You have to understand where I was - at this point in my life.  My mother called NF "God's Curse"...and had so much anger whenever I would ask questions about it.  I already had a flawed view of what NF was...And to see what NF could be, brought me to a place where I just didn't want anything to do with it.

Recently, I got a GOOGLE alert for Neurofibromatosis, that talked about researchers AGAIN doing studies on the famous Joseph Merrick bones, that rest in a small museum in London.  My first thought, was to just let this man rest in peace!  (Read that article HERE)

But...At the same time, wouldn't it be nice to set the record straight?   I know I am not alone - when I say, I don't like it, when people connect who Joseph had and NF...especially if it is found that he did NOT have NF...But... what if studies reveal that Merrick DID have NF?  Not to stir up any anger here...But it IS possible for him to have suffered from BOTH NF and Proteus.

My thoughts doing a ping-ball dance in my head as I flash back to one of our doctors who claimed he knew "A LOT" about Neurofibromatosis....Calling it "The Elephant Man Disease"....And how I quickly corrected him, telling the know-it-all, that Joseph Merrick...Had Proteus Syndrome...Not NF.  

I talked to my husband while writing this blog post.  When he speaks to audiences about creating a 'Win Anyway' attitude, he often brings up our family and NF. He mentioned that when he brings up The Elephant Man, it's give people perspective about how variable NF can be - and that his wife and kids could walk in and nobody would have a clue they have NF - because, right now at least, it's primarily manifesting itself internally, not externally.  

I love the way he can talk about NF....And appreciate him so much for bringing people to understand it....But for some reason, "The Elephant Man" thing has always boiled up anger inside of me....WHY?? Why are people (including ME) so bothered by this?

It's because, for me anyway, it's scary.  Merrick truly suffered with his condition(s) and lived a life being stared at, mocked and tortured....Eventually dying - trying to be "normal".  He was terribly deformed and I am sure in a lot of pain.....And honestly, he is hard to look at....leaving me feeling like perhaps I can be accused of doing to HIM, what I hate people doing to ME.....I don't like this feeling.  

He was a man, above all.  His story and condition may be a hard one to understand and deal with, but his story is worth learning about.

In the long run, it really doesn't matter if Joseph suffered from NF, or Proteus, or a combination of both disorders.  What DOES matter is letting go of the Stigma -- 

I don't personally use The Elephant Man description to help people understand NF...Because it's inaccurate (until proven otherwise)  While it may help people understand the variability...It just isn't the way I do it.

THRIVE ON!

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!

http://www.oprah.com/oprahshow/Living-with-Neurofibromatosis

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!