Monday, September 2, 2013

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.



  1. I had a friend on an online moms group. Just a moms group not medical/NF related. Anyway she posted something about how her oldest daughter had to do a research project and I forget the criteria but she ended up going with NF. The mom was posting about how the project was coming along and mentioned The Elephant Man and NF and my brain did a screeching halt and I sent her a message and informed her (for the first time) that I had NF and I sent her to a few good sites and I told her about my own experiences. Her daughter corrected her paper, and included that NF is NOT the Elephant Man but is often mistaken for that.

  2. As someone who will be marrying someone with NF, your viewpoints on Joseph Merrick horrify me. There is a VAST difference between educating those on the misconception that "Elephant Man"=Neurofibromatosis, and referring to another HUMAN BEING and their affliction as a "stigma". Mr.Merrick did not ask to be so horribly deformed and disabled, and I think it is sick and hypocrytical to view him as someone you don't want to be associated with when you YOURSELF bang on and on about education and understanding. I think your husband is 100% spot on with his ideas on how to use Mr.Merrick's case as a teaching tool, instead of further insulting the man. My partner, who has NF, would never be offended by someone asking if NF is the "Elephant Man Disease". Think of it this way. Say you were diagnosed with breast cancer, and you told someone what you have. They reply "oh, that's what your (hypothetical) cousin had, right?", And you respond with anger and "No, its entirely different blahblahstigmablahblah". How absolutely ridiculous you would sound, and how cold and callous people would think you were for "not wanting to be associated with that person and their stigma".

    1. Ok....So in response to my anonymous commenter. Why is it that you are anonymous? I think my blog post was misunderstood.

      If you talk to a number of people with NF....One of the things that bother them most, is when people associate Merrick's condition with theirs. I called The Elephant Man a stigma...One of which I admitted to being guilty of using.

      I know he was a man. A very brave man who allowed himself to be studied and photographed....But aren't I doing a disservice....If I were to go on to say that "oh ya I have NF...u know, the elephant man..."
      And....I never respond in anger, if people are truly wondering and asking questions.

    2. Anonymous- I too suffer from NF. I absolutely HATE it when people refer to my condition as what Merrick had. (No disrespect intended)
      I was on the phone with a friend of mine who I hadn't seen in several years. My friend and I talked for for a few months on the phone and it was during this time I got my diagnosis of NF.

      My friend and I talked openly about NF.

      A few weeks later she came for a visit, and when she saw me, she breathed a sigh of relief. When I asked her what was wrong, she told me "I googled your condition, and I was afraid to see u because I saw what u COULD look like and I was afraid I wouldn't respond in a good way."

      She went on to tell me that she saw pictures of Merrick.

      I had to explain that Merrick has been often confused with having NF.

      To Kristy: Keep on writing ...Keep on spreading your message. You wrote what MOST of us with NF think. Don't let some Anonymous comment throw you off what you are doing!

    3. Anonymous-- I will not continue to allow your comments. Just because I dont agree with you...does NOT make me a hypocrite or cruel.

    4. My blog. MY viewpoints. If you don't like what you read...You don't have to follow me. Your last comment was deleted, because -- you just seem so angry yourself, that anyone would dare have a problem or not see things the way you do.

    5. kristi i have read your above remarks. i have been diagnosed with fibromatosis, it is growing in my left side back shoulder blade. it is supposed to come out oct. 25 '16. the word neuro has not been used when referring to this mass but tumor, non malignant has. i havent read all the articles but i am amazed at all the articles. thank you for all you say. keep up the good work and God bless you

  3. When you are in the public eye as you are my dear, you ruffle a few feathers. Am I right? Your blog has helped me and my family in countless ways. A few anonymous don't say anything about you. You are wonderful and I thank you.

  4. I was at a dental office in Long Beach Ca and yes I told the dentist I had NF and he aid elephants mans disease boy was I mad I was thinking of breaking that ignorant fools xray machine. It seems according to a newer textbook I read that the elephant man actual had both Proteus and NF2 not NF1 as the cause of death involved his brain stem snapping. NF2 people rarely confess to having plexiforms as if it an NF1 thing only they do get plexiforms albeit schwannomas ones. NF2 1 in 25,000 Proteus 1 in 3,000,000 or so people so the elephant man was one of a kind

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