Katie VanderKooi Scoliosis Advocate – Spotlight Interview

Posted by Connie on Sunday, August 7th, 2011 at 7:33 pm and is filed under Blogging Community, DisABILITY Advocate, Health Information, Spotlight.
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Katie VanderKoois is a young Scoliosis Advocate, who was diagnosed with Idopathic Scoliosis at the age of six. Now as a college student majoring in Music Education, Katie is a blogger,  and is a member of forums to help inform others about brace treatment and surgeries to treat Scoliosis and offer support.

Idopathic means that there is no known cause and Scoliosis means abnormal curvatures to the spine. Katie has two curves. When she complained to her parents that her back hurt, she had MRI’s and Xrays done which showed one 18 degree curve. At 10 years old, when a checkup revealed that  she had two curves and they progressed to about 23  and 27, her doctor decided to brace . She wore 5 Boston back braces in about a 6 year period. A Boston brace is made of plastic that extends from under the arm pit to just below the hips.

Unfortunately, the braces didn’t help improve the curves, instead they worsened – to 52 degrees and 57 degrees.  Now, she was in the serious range and started to have difficulty breathing and back pain on a daily basis.

So on November 17, 2009, I had two 18 inch titanium rods screwed into my spine with 18 screws. The surgery took about 7 hours, and my surgeon also fixed my flat back syndrome. That’s when your lower back has no inward curve. So he reduced two curves, and gave me another one. While spending about a week at Shriners Children’s Hospital, I had to learn to do almost everything all over again—how to walk, stand up, hold things, sit down– basically how to move. And now I am left with perfect posture and an awesome 18 inch scar, also called “the Big Zipper”.

According to Katie, Scoliosis make your body asymmetrical. This can cause:

  • Your hips and shoulders become uneven
  • Your ribs to twist, making one side stick out
  • One side of your chest may cave in
  • One shoulder blade may protrudes out, which causes that shoulder to roll forward
  • Rib humps, where one side of your back has a hump
  • And other medical problems

Katie’s family has been and still are her main support system. Although she feels that her my parents were very protective, which she didn’t always like, she realizes that they meant the best and is thankful now. She also has her faith:

I am a Christian. I believe that God created this world, that we are sinners, and that because of that sin, we deserve to go to hell when we die. But I also know that God sent His only Son, Jesus Christ, to come to earth, live a perfect life, and die for our sins so that we can be right with God and live with Him forever in heaven someday. And the great news about it all is that Jesus rose from the dead, and I serve a living God! He is the ONLY reason I have gotten through what I have. It has not been easy, but He gives me such hope and joy that only He can give. And knowing that He created me for a reason, including my scoliosis, makes me so thankful for it. He is in control and does only what is best for me. If He has the power to save me from the punishment of my sin, I know He has the power to get me through any temporary trial here on earth.

Now she makes use of the internet for support and to help others. She’s a member of join WEGO Health, Daily Strength, and the National Scoliosis Foundation Forum. The NSFF has been very helpful because the members all have Scoliosis and either have gone through or are going through very similar situations. On her blog, Brace YourSelf, Katie writes about Scoliosis, her own experience with it, including how she is dealing with it emotionally.

Katie VenderKooiKatie is doing well as a college student even with her practicing and playing the piano and clarinet. She doesn’t hurt much, but if she overdoes it, she knows it. She also works at the music library on campus and is thankful that she is able to shelve books and sit at her desk. Heavy lifting is not allowed and working outside can cause her pain.  Even if she isn’t hurting, I she must be careful to avoid the the rods in her back from breaking. She cannot bend her back, so things we take for granted like putting on nylons, painting my toenails, etc. are difficult.

The chairs in hair salons and the seats on airplanes cause her problems because her back doesn’t fit into them, so she is often sore after getting a haircut and taking a flight.  But, Katie’s positive outlook allows her to look at what she is able to do and focus on that. She’s also learned to make adjustments for not being able to bend her back.  And meeting new people who have been affected by Scoliosis has made her life more positive. And she’s never given up on playing volleyball, even when it became difficult to breathe. Almost 2 years post-op and she’s back as an outside hitter again! It’s definitely different,  and a little harder because of her restricted movement, but she’s having fun!

Scoliosis hasn’t stopped Katie from making plans for her future.  She’d like to be a school music teacher (general music teacher, band/choir director, etc.), have a piano studio, and teach woodwind instrumental lessons and  become a volleyball coach. She wants to give back to the Ronald McDonald House, where her parents stayed during her surgeries (at no charge) through charity events, such as a concert and a volleyball tournament.

Katie’s beautiful video gives others with Scoliosis strength to get through the tough times:

Kaite VanderKooi is an advocate for people with scoliosis. She’s worn back braces for almost 6 years and went through spinal fusion surgery at the young age of 17. Her knowledge, positive outlook and willingness to help others is a gift to the Scoliosis community.

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

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  1. Stories like Katie’s are great for young scoliosis patients to hear. She is definitely someone that they can look up to and identify with. Sometimes it really helps to know that you aren’t the only one going through it.

    comment by Treating Scoliosis — August 9, 2011 @ 1:53 pm
  2. This is very motivating story. A great example for other people struggling with their problems.
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    comment by Marlene — August 16, 2011 @ 7:55 am

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