The Sharks in the Waters

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Most babies are perfect in their parent's eyes. Ten fingers and ten toes is all they need, and if they have an eleventh finger, well the doctors can cut it off.

Some, tragically, are born with illnesses, disfigurments and disabilities that are apparent even at birth. The parents spend their finger-counting time shedding tears and rallying relatives for support as they try to meet their child's needs. Some parents quickly realise that perfect isn't an option.

And then there are those of us who have babies born with imperfections that aren't immediately noticed: metabolic disorders, chronic illnesses, developmental delays. These scenarios hide in the oceans of contentment like icebergs that will eventually and inevitably hit. Parents carry on with their image of the perfect child until the first devestating blow when they realise that fingers and toes have nothing to do with it at all and that the life they planned has been exsanguinated into the vials of blood the doctors order to assess and diagnose.

Some approach this growing terror calmly, like the band playing hymns on the deck of the Titanic. Others jump straight into the oceans of panic and despair. Other still sit patiently in lifeboats waiting to see a glimmer of hope: rescue approaches.

But whether calm, panicked or patient, all parents seek more information. The panicked ones may find their fears eased or reaffirmed. The calm ones may begin to strategise and plan or decide to turn a blind eye. The hopeful seek any sign to maintain their hope.

I'm not sure which I was when we found out Emerson had NF. Perhaps all three raged at once in my psyche. I remember an outward calmness and an inward panic. I remember the panic growing as I first searched the Internet and other media for information on his condition. It took a lot of willpower to remind myself that people love sensationalistic media - that the images I saw and the words I read were tinged with worst case scenario-itis.

I found sources of information I trusted and I clung to reassurances. I consider our family lucky to not have received a more deathly or certain diagnosis. Perhaps Emerson will never, ever, ever have a problem due to this disorder. Hope flashed like a searchlight in the dark and I heard the calls of rescuers.

Courtesy of http://www.everystockphoto.com/photo.php?imageId=602977
But there are sharks in the waters. There are those that feed on sensationalism and tragedy to satiate their own hunger for fame or money. Sometimes these shapeshifting sharks are easily mistaken as liferafts or the arms of rescuers - until they strike.

When news that Oprah Winfrey would be airing a piece on Neurofibromatosis first hit the NF community, I was happy. After all, many people watch her show - many mothers especially. Awareness is key when fighting such an unknown disorder. And when I thought of all the mothers that might potentially be given the liferaft before they hit the iceberg I was ecstatic. I pictured women watching the show and learning about NF: learning that it isn't a death sentence or a curse of disfigurement; that it didn't happen because of the diclectin or paint fumes or something they "gave" their child. These women would hit the ocean swimming if their child was ever diagnosed: forwarned is forearmed.

I didn't watch the segment because I just don't watch TV. Also because I felt there was little I would personally learn from it, having spent my quota of 3 am research to keep myself updated. So the next day when the proverbial hit the fan in the NF community I was a little surprised.

I watched clips and read a transcript of the show. And I knew why people complained. The number of mistakes made in that 20 minute segment could cause (and did) hour upon hour of heartache for parents learning about and dealing with NF.

But, I thought, this is just one of many shows she airs. I'm sure she doesn't do the research herself. She relied on the doctors she interviewed and her staff researchers to provide her with the appropriate information. Remembering my own struggles in the search for truth about NF, I realise how her researchers could have made mistakes (the doctors? There's no excuse). I didn't jump on the Hate Oprah bandwagon.

Along with many others, I sent emails and letters to Oprah and the Harpo team. I gently asked them to acknowledge their mistakes by airing a correction to their previous segment. I prayed for the mothers who watched that show and believed what Oprah - their own personal info-goddess- told them.

Instead of airing a correction, however, the sharks decided to reair the segment, completely unedited and with all the false and sensational information intact. They have not even acknowledged the cries of foul from the NF community.

I still have hope and calm and often fears, but Oprah has made anger a more resonant feeling.

When sharks attack, survivors attack back. If you're reading this and you care at all about the one in 3000 children born each year with a disorder that Oprah has wrongly called Elephant Man's Disease and told mothers that children can only inherit from affected parents. If you care about my beautiful boy, my feelings, our family. If you believe that truth is valuable and sensationalism a sick puppet of the media, then please join me in boycotting Harpo productions and all their products.

Following is a list of Harpo owned/operated media and businesses:
  • The Oprah Winfrey Show
  • O, the Oprah Magazine
  • Harpo Radio
  • Harpo Films: (see http://www.oprah.com/entertainment/Past-Harpo-Films for a list)
  • Three charities: The Oprah Winfrey Foundation; The Oprah Winfrey Leadership Academy Foundation; Oprah's Angel Network
  • Oprah Winfrey Network (ironically a joint venture with Discovery Communications to replace Discovery Health)
  • Then there's the books endorsed through her book club - that one's up to you. Personally as long as you don't buy the one with the Oprah approved sticker on it and gush about how brilliant the shark is (because she actually READS!), I'm okay with you reading your fine literature.
When letter and emails and cries of foul were sent her way, Oprah chose to ignore them. Harpo productions allowed the controversial segment to re-air. Their ignorance could be excused once, but ignoring the corrections they were sent was stupid, hateful and downright aggresive. This shark needs a sharp punch on the nose.


  1. I truly hope something happens after this airing. Stay Strong Dara!

    Scott, from Facebook and Canada.

  2. So sorry to hear.

    Is it still possible that she didn't personally get the emails or that things move too slowly in tv?

    (sorry I am for benefit of the doubt)

    I would still plug at her on twitter and email and through the internet to correct her mistakes. It can happen.

    Lots of hugs.

  3. Well, I'll happily join you in the boycott, although not much of a challenge for me as I never did any of the above things anyway. I am however appalled that this happened, getting things wrong once is understandable, it happens, yes it means shoddy research etc but people can make mistakes, but ignoring the mistakes, refusing to acknowledge the wrongs and the upset and fear they caused, and then airing it again, that is unforgivable.

  4. I was suspected of having NF when I was younger and remember that my mum struggled to get reliable information, even the doctors were reluctant to tell her as they didn't want to worry her until they were sure. (In the end they decided my symptoms weren't enough for a full diagnosis, I was diagnosed wit benign intra cranial hypertension though.)

    To be given incorrect information is horrible and can be so detrimental to the families trying to overcome what is a life changing situation. Although everyone makes mistakes; ignoring those mistakes when they're pointed out to you is just not right. Not only is it unprofessional but it is rude and ignorant.

    If any of the endorsed shows raise their heads around me I will be boycotting.

    I hope Emerson is doing well x

  5. That's awful! I would have thought that someone who has a show as widely watched as Oprah's is would be super careful to only portray accurate info.
    I'll happily join you in the boycott!

  6. That's disgusting. I would say consider them boycotted but given that none of them exist (as far as I'm aware) over here I'm sort of a lifetime boycotter!
    I really hope she realises the damage she's done and rectifies it sooner rather than later

  7. @Livi - glad you're a lifetime boycotter. They seriously don't have the Oprah show over there?
    @c'est la vie - you would think so, wouldn't you. Thanks for joining in!
    @Monkeyloulou - glad to hear you don't have NF hope the intracranial hypertension hasn't affected you too much. It is horrible when trusted sources provide wrong information. I tear up everytime I think of all the women know walking around with wrong ideas about NF because of Oprah's incompetence.

  8. That is terrible! I didn't see the segment, but it sounds like it was sensationalist from your description and I just HATE that kind of media, I really do. Big hugs to you


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