Day 160 – Many Shades

Art Apple - Day One Hundred Sixty

There are many shades of correct and a lot of grey area when it comes to ways to express ourselves.

I didn’t know the areas I would wade into when I started my mission to help raise awareness of Ankylosing Spondylitis but as time has progressed for me on this journey, I’m finding that I feel a deep responsibility to represent people with AS because I have a platform and a voice to do so.

Recently an article was published by ABC news in their internet health pages. It is a much needed article which is why I find it very difficult to criticize, but there is a glaring misrepresentation that has to be brought to light and corrected. The headline of the piece is “Bamboo Spine: Too late for Dad, Not for Daughter” Seriously – who writes this stuff? There are three huge errors in that headline but the glaring one is using the term “Bamboo Spine” to describe Ankylosing Spondylitis. According to the Spondylitis Association of America, bamboo spine is a phenomenon found on x-rays where the bone is shown growing from the edge of the vertebra across the disc space and between two vertebra, resulting in a bony bridge.

Bamboo spine is not synonymous  with Ankylosing Spondylitis. Bamboo spine in my opinion is a derogatory term and ABC News should correct their error.

The next question I have to ask myself is why this bothers me so much, but I’ve decided to dismiss that question as sheer silliness. The question should be why wouldn’t it bother me? Thirty three million people world wide have a disease called Ankylosing Spondylitis – it IS NOT called bamboo spine – stand up today and fight this one or we are at risk of staying muddled in the grey area of misunderstanding.

Until tomorrow.

Jenna

Day 160 was painted in Mocha Parker Ink

*** Update ***

3/10/2011 5:48 pm – As you will see in my above post I have stricken the sentence “Seriously, who writes this stuff” I feel that it was an insensitive and disrespectful comment to make especially in regards to a story that is high profile and very important in raising awareness of AS. Please accept my apologies – passions can sometimes lead to remarks that are inappropriate.

*** Update ***

3/10/2011 1:50 pm – I love twitter – I was able to communicate with a producer at ABC Health News this morning and he has agreed to change the article – not the headline but part of the email I received stated :

“However, based on your concerns I have taken a closer look at the story, and it is mentioned that:

“Haskew has ankylosing spondylitis, or AS – sometimes called bamboo spine for the way it fuses the backbone…”

In light of your comments to me, what I will be happy to do is clarify this line to read:

“Haskew has ankylosing spondylitis, or AS, which can lead to what is identified on X-rays as bamboo spine due to the way it fuses the backbone…”

9 Replies to “Day 160 – Many Shades”

  1. Dear Jennifer:
    I think that you are making a big deal about nothing.
    First, who writes this stuff? Well, people who are trying very hard to get the word out about our condition. People with excellent intentions. Secondly, Why would they use such a term? Because it has been used in medical literature to describe the appearance of the fused spine on X Rays. And Again WHY??? Because it is a HEADLINE! TO GRAB THE READERS ATTENTION! So they will actually be curious about this condition and actually read an article that might help them. Had the article been some boring Title like Ankylosing Spondylitis: A Father and Daughters Journey, It really would not grab as much attention. So journalism comes into play and the use of accurate journalism to maximize the impact of a single article to have the greatest chance of grabbing the reader, of pulling them into the article comes into play. The description is NOT inaccurate or derogatory and personally I do not take ANY offense for the use of the term and frankly don’t understand why anyone with our condition would, or for that matter, make such a big stink about it.

    1. Tom,
      I am so passionate about AS awareness. I’m sorry if you disagree with me. I’m so glad we have a community of people working to get our message out there. I loved the piece except for the fact that it highlights a term that is used to describe x-ray findings and one aspect of the disease. This is why I feel strongly that AS doesn’t become known as bamboo spine – it is so much more complex a disease. My immediate reaction to the headline using the term bamboo spine was intense and emotional. A visual symbol to describe a deformity is by its nature pejorative and I want no part in it. Terms come and go – I hope this one gets lost 🙂
      Big Hugs!
      Jenna

  2. Jenna – you’re going to get me started….I read the article last night and things about it bothered me but also glad more is being published. I’m dealing with iritis right now and it upset me that the major emphasis was on low back pain – I know that traditionally, that’s a defining symptom but AS is so much more. My lower back has been the least of my problems and I’m pretty sure I’m not an unusual case.
    Sorry for the vent but it feels good.
    Mary Cay

  3. I heard on NPR this morning that lupus affects 5 million people world wide. As we know, AS affects 33 million people world wide. Lupus has name recognition. AS needs and deserves name recognition. And AS sufferers need support. I believe the reporter felt that the title. Bamboo Spine”, would attract attention, whereas Ankylosing Spondylitis would not.
    Thanks to all the organizations and individuals who are working so hard for AS awareness. Jenna,
    my daughter, is my favorite of course.

  4. Hi Jenna!!!

    I include this apple in my “favorites”, the color, the form is really beautiful.
    You are doing an extraordinary job in this amazing journey, the journey to achieve more understanding and knowing of AS. I read the article “Bamboo Spine” some days ago and you are right in the things that you said in this writing. Thank you so much for your effort, I appreciate every day the strength that you have.

  5. I am thrilled to see Jennifer Dye Visscher use her extraordinary talents in such a positive and powerful way, to help move the cause of understanding and overcoming AS forward through visibility and education. I might not be able to pronounce it or spell it, but I certainly am learning what it is! The term, “bamboo spine”, might not be accurate but it did help me understand another symptom/aspect of this illness. The most important thing is that word of AS spread so more can be done to help. Bravo, Jenna, in all that you are doing! Your (very proud) Aunt, Jill

    PS I have a different spinal challenge with another difficult name: Arachnoiditis, caused by an epidural for a herniated disc (the injection was done improperly, and the surgeon injected depo medrol into my spinal canal which even its manufacturer advises against since this is often the cause of Arachnoiditis.)

    1. Thank you so much Aunt Jill.
      I wish no one were ever dealing with these horrible diseases. Pain robs our quality of life and is so complex to treat. Judgments unfortunately are so prevalent when it comes to chronic pain and there are so many diseases and conditions that cause it.
      Love you!
      Jenna

      For more info on Arachnoiditis

  6. Jenna
    I completely agree with you. AS is much more then the curved spine. As you know i have lost my sight due to this nasty disease. If people would know more about it, I wouldn’t have lost my site. I understand the reporter wants to grab attention, but there are many ways to do this, without being derogatory. Many people with AS have no visual symptoms that cause an insane amount of pain and mental anguish. Keep on doing what you do. I for one appreciate your efforts.

    1. Stephanie,
      Thank you so much for your support. I have seen the affects of AS on peoples sight. I wish more people knew about this as well as some people who have serious heart complications. I will keep working to bring awareness – in all shapes and forms.
      A big hug to you!
      Jenna

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