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.

June is Scleroderma Awareness Month

Posted by Connie on Tuesday, June 21st, 2011 at 2:06 am and is filed under Advocacy, Autoimmune Disease, Chronic Illness, Health Information.
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Scleroderma is a rare disease, so a health the June awareness month is a great way to share information. An autoimmune disease with treatment, but no cure, Scleroderma affects about 300,000 people in the United States.

Scleroderma means hard skin and affects the connective tissues leading to inflation, scars and thickening of skin. The most common areas of  skin that are affected are the of elbows, fingers and face. If this disease is diagnosed in its early stages, there is less damage and less serious symptoms. It is important to know the symptoms of Scleroderma because as with many autoimmune diseases, diagnosis can be difficult.

Scleroderma RibbonSymptoms

  • Skin changes – swollen fingers and hands, puffy skin, thick patches of skin, especially on the fingers, tight skin around the hands, face or mouth. Skin may look shiny, and movement may be restricted.
  • Raynaud’s phenomenon the small blood vessels in the hands and feet are affected by cold or stress, which causes numbness, pain and/or red, blue or purple skin.
  • Red spots on the fingers, palms, face, lips, or tongue.
  • Loss of the skin’s ability to stretch.
  • Itchy skin.
  • Fingers are curled.
  • Digestive problems – heartburn, GERD, or trouble swallowing food.
  • Fatigue.

Types of Scleroderma

Children can develop Scleroderma and it most often Localized, which means it only affects the skin. The most common symptoms of Localized Scleroderma are Morphea, which are oval shaped skin patches that have a purple border and white middle and Linear Scleroderma, which are bands of hardened skin usually on one side of the body.

Systemic Scleroderma affects your skin, blood vessels and internal organs. It occurs suddenly and can get worse quickly within the first two years. There are subcategories of Systemic Scleroderma depending on what area of the body is affected.


Blood work, biopsies and a thorough skin assessment are some of the tests done to help diagnose this disease.


Scleroderma is treated with various types of medications depending on the area of the body or the organs affected and physical therapy. Sometime surgery is necessary.

Share the Information

Spread the word and raise awareness by sharing this post, by liking the Scleroderma Foundation page on Facebook and by sharing your story if you have been diagnosed with this disease or know someone who has.

Learn more about Scleroderma from the Scleroderma Foundation.

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Fibromyalgia Pain Relief

Posted by Connie on Friday, June 17th, 2011 at 12:42 am and is filed under Health Information, Prescription Medications, Support Group.
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Is it possible to get pain relief when you have Fibromyalgia? I wondered that when I was first diagnosed with Fibromyalgia. Finally I had an answer to why I hurt so much all of the time, but my next question to my rheumatologist was, “Can you cure me?” I guess he was used to hearing this quite often, so he  explained that he could help me relieve the pain, but that there is no cure to this disease.

He uses various forms of Fibromyalgia Treatments, but first he had to know more about the pain I had and other symptoms. Because I have other medical conditions, he had to take those into consideration with his treatment too. He asked me detailed questions about where I felt pain in my body and the type of pain and when I had it. He asked about headaches, memory problems, feelings of sadness or anxiety and stomach issues.

He also took blood work to test for autoimmune diseases, arthritis and to check my blood count, etc. My treatment wasn’t decided upon in one day, or even one year. He treats me depending on how my symptoms act up and if there are any changes.

Basically though, my pain relief comes in the form of prescription medications and trigger point injections. My doctor also recommends stretching and other mild forms of exercise, relieving stress, and joining a support group.  He had prescribed pain medication in the past, but I no longer use it. I’d rather be alert and feel some pain, than feel drugged and not be able to enjoy my life.

This is a sponsored post. All opinions are my own.

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Myasthenia Gravis Awareness Month 2011

Posted by Connie on Sunday, June 5th, 2011 at 5:49 pm and is filed under Advocacy, Chronic Illness, DisABILITY Advocate, Health Information.
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June is Myasthenia Gravis Awareness month and for 2011, the  main focus is “Uniting for a Cure… Together we are Stronger.” The Myasthenia Gravis Foundation of America is asking us to help share information about this disease and to help find better treatment and ultimately a cure.

Myasthenia Gravis Awareness

As someone who has had Myasthenia Gravis for 8 years, I’m always willing to do what I can to help this organization. Plus, since I know that even medical personnel often do not know what MG is, awareness is very important. In fact it can save lives. When someone with MG goes into a crisis, they may not be able to speak or let anyone know what is happening with them. Everyone from first responders to surgeons needs to recognize the symptoms of Myasthenia Gravis, how to treat someone in crisis and what medications can help or harm.

I’ve written about what my life is like with Myasthenia Gravis. It gives you a picture of some symptoms people may experience. I hope that you’ll take the time to read it.

The Myasthenia Gravis Foundation of America describes MG as:

Myasthenia gravis means “grave muscle weakness.” MG affects voluntary muscles such as those in the arms, legs, eyelids, mouth and those muscles used for breathing; the disease is characterized by general fatigue. Currently, there is no cure for MG, but there are effective treatments.

My first symptom of having MG was a droopy eyelid, which quickly moved to weakness in other parts of my body. I have had a thymectomy within the first 6 months of being diagnosed. I take Mestinon and Cellcept and am seen by a neurologist who specializes in MG through the MDA. I have good days and bad days and have learned my limits. Some days I need to use a scooter to get around, some days I can walk around a shopping mall. The heat of Florida does a number on me, so I stay indoors often, or go out in the evening.

MGFA’s mission is to find a cure for myasthenia gravis and closely related diseases, to improve treatment options and provide information and support to people with myasthenia gravis through research, education, community programs and advocacy.

Please support Myasthenia Gravis Awareness Month by sharing this post, by volunteering, by making a donation, and by being an advocate.

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National Women’s Checkup Day Webcast

Posted by Connie on Sunday, May 1st, 2011 at 9:02 pm and is filed under Advocacy, Health Information.
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The National Women’s Checkup Day webcast will be held Monday, May 9th, 2011 at 4:00 p.m. PST / 7:00 p.m. EST on Ustream. Hosted by Monistat, Beverly Hills OB/GYN Dr. Suzanne Gilberg-Lenz will answer common women’s health questions and will also discuss the recent results from a Monistat survey.

If you have a question that you’re too embarrassed to ask your gynecologist, here’s your chance! Just send an email to and Dr. Gilberg-Lenz just may answer it during the live webcast on National Women’s Checkup Day. You’re not alone if you’re not asking. According to Monistat’s survey, “32 percent of women are not proactively asking their gynecologist a single question about their health.”

National Women's Health Week

The ninth annual National Women’s Checkup Day is the same day as the webcast, during National Women’s Health Week. This day is dedicated to promoting women to get regular checkups for the early detection of heart disease, diabetes, cancer, mental health illnesses, sexually transmitted infections (STIs), and other conditions.

When you receive a screening test, such as a mammogram and Pap test, diseases are found early, when they are easier to treat.  Tests and checkups can also lower the risk of health conditions. So tune into the National Women’s Checkup Day webcast hosted by Monistat  (you can click on Join Crowd to get an email reminder) and take the pledge to schedule a checkup and get important screenings, learn what screenings and immunizations I need and when, and schedule at least one health screening during May 2011.

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Ovarian Cysts

Posted by Connie on Tuesday, April 26th, 2011 at 11:52 pm and is filed under Health Information.
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Many women are affected by ovarian cysts. Some woman have them without even knowing about it, while others suffer from them. They can occur at any age, but only after menstruation has started. An ovarian cyst that doesn’t cause pain or any other symptoms needs no treatment and disappears on its own. Others are painful, can become large and/or can become filled with body tissue.

There are many forms of ovarian cyst treatment. Treatment depends on the severity of symptoms and the type of cyst present. Some of the treatments include:

  • pain medication
  • birth control pills
  • surgery to remove the cyst
  • monitoring the cyst by ultrasound

A very different type of treatment is the Ovarian Cyst Miracle Cure – an ebook written by a nutritionist, who provides a series of steps to treat cysts naturally. You can learn more about this book by reading the ovarian cyst miracle review.

This is a sponsored post. All opinions are my own.

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