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Mrs. Kansas wants to use platform to promote self-advocacy

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TONGANOXIE, Kan. -- A Tonganoxie woman is 2014’s Mrs. Kansas. She's now using her title to promote self-advocacy and to raise awareness of a brain disorder that nearly took her life.

Underneath the crown is a scar that reminds Donna Hoegler of a year-long battle she almost lost.

“The second they told me it that I had probable MS, something inside me told me I didn't,” Hoegler said.

The 2014 Mrs. Kansas Winner actually had Arnold-Chiari Malformation. It's a brain disorder commonly mistaken for multiple sclerosis.

“My brain is coming down into my neck at an angle and it's pushing my spine into my throat, and it was hanging me from inside out,” she said.

She said it took doctors almost a year to correctly diagnose her. There's no cure for Chiari, only pain management. Hoegler says she can't feel the left side of her body. This ordeal has made her stronger and she's using her experience to help others.

“If I was that close to dying, if I hadn't pushed the doctors to keep looking deeper and deeper, I wouldn't be here,” she said. “I want people to listen to themselves and no one can tell you how you feel. You're the only one who knows how you feel. So be a self-advocate and tell them.”

As Mrs. Kansas, she hopes to use her title to push for self-advocacy. After winning her crown, she moves on to the Mrs. America pageant.

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13 comments

    • michele b

      I am an advocate as well and it is a disorder of the brain

      CMs are classified by the severity of the disorder and the parts of the brain that protrude into the spinal canal. I dont see why there would need to be a correction verbiage yes but same difference at the end of the day.

      • Brenda b

        Amen! No matter what itnis called malformation, or disorder. Its something that needs to be heard. No need for correction. My daughter is going to have her 8th surgery in one week. Good luck to this young lady for being an advocate. May we all work together on making others aware of this condition and never ever give up until you get answers.

    • Nicole Paruas

      My son was just diagnosed on Friday with this. One any of you advocates be willing to contact me. My sosn neurologist just sent us home with pain meds and migrain meds and said he would see us next month. My son is missing school a few days a week. He is in almost constant pain, tired, has blurry vision, has lost 20 lbs in about a month and now I have noticed his eye drifting. I am desperate for guidance.
      nparuas2010@yahoo.com

  • michele b

    I forgot that its my 3 year zipperversary March 7,2011 since my brain surgery wow then a year after that I took a cruise me and my bestie. First vacation in years then the next year same time started working out and getting healthy and now this year finally going to see Dr Oro in Colorado get some answers of all the residual issues and increase complexities since my surgery. My life had its ups and it has its down but no matter what I try to find the positive with in.I am an motivator and an inspiration of people I have had to advocate for myself I would love to talk to her because there are not very many people in our area with this disorder I have talk to about 15 or so. I have not let this illness stop me either I have finished a bachelor last year and going back for a master next year. life is what you make it spite the pain,numbness and limitations you may encounter.

  • Staci alspaugh

    I have CMs and I live in Missouri I’ve had it since birth , I’m 45 . I’ve had decompression surgery , I have ups and downs with it. I have worked for 26 yrs as a nurse before disability CMs causes other symptoms of diseases , osteoporosis kyphosis lordosis fix hips MS symptoms memory Alzheimer’s . I have showed all . I have diabetes on top of everything that adds on to the disease . I had my surgery at university missouri hospital and clinic

  • Karen W.

    I also had Chiari with it taking over a year and numerous tests to rule out other disorders such as MS before a neurological consultant finally made the diagnosis. The symptoms can vary which makes it difficult since most of them mirror other things. Also because it’s so rare, it seems (at least in my case) that the radiologists miss it. For over a year, 24 hours a day, my entire body had pins and needles like when your foot falls asleep. Dr. Oro did my decompression surgery about 10 years ago and after about 6 months, I have now been symptom free!

  • SJRODGERS

    Newer info: Name changed to Chiari Malformation with a number inserted to specify the type, as in Chiari-1Malformation, which is the most common. There are numerous associated conditions such as Syringomyelia, Hydrocephalus, Tethered Spinal Cord, etc., that must be managed as well. A significant number of Chiarians have an underlying hereditary disorder of connective tissue (HDCT) such as Ehlers-Danlos Syndrome (EDS), which alters the protocol for successful Chiari management. The most important take-home message: be sure to see a true Chiari expert!

  • Melissa M. Miller

    This is so amazing! I’m actually heading up a fundraiser for my friend Belinda to have her surgery for Chiari I Malformation. I’m so excited to see this Mrs. Kansas use her title to raise awareness. Ever since learning of my friends condition, I’ve been working hard to become an advocate for awareness for Chiari, it’s related syndromes and pretty much any other qualifying cause that needs awareness raised. I’d love to partner up with Mrs. Kansas to help her utilize the power of social media as well as the power of bloggers to help raise awareness.

  • Jennifer

    Thank you, Donna (Mrs. Kansas) for bringing our condition to the forefront. It’s nice to see people in the spotlight, such as yourself, and Rosanne Cash, and the 2 Olympic athletes speak up about Chiari Malformation. It gives me hope that someday, people with chiari won’t have to go through several doctors in a search to find just one who knows what Chiari is and how to treat it. Chiari is more common than first suspected and it really needs to become standard in medical training so people like us don’t keep getting misdiagnosed, meanwhile our nerves continue being damaged while we wait. Good job. and Good luck! again, Thank you.

  • Rosa Brantley

    Know just what you are going through, had the operation in October 2008. It’s something that go away over night. My brain to was going in my spine making for all types of problems. Just recently I had to have a backfusion and my balance is off like before, the doctor seems to think the two are fighting against each other. Not a good feeling, makes you afraid to go anywhere by yourself.