A Sedalia family is hoping to bring more awareness to a somewhat common disease that is not commonly diagnosed.
Dysautonomia is a group of medical conditions that result in a malfunction of the autonomic nervous system, which is responsible for “automatic” bodily functions one may not always think about, such as respiration, heart rate and blood pressure.
“It is a substantial failure of the autonomic nervous system. It’s like Microsoft Windows — it runs in the background of your computer, but you don’t think of things day to day until you get a blue screen,” said Dr. Josh Valtos, a cardiologist at Missouri Heart Center in Sedalia. “It’s not like your nervous system, like when someone pokes you or you stub your toe; it controls things like heart rate, bowel function, posture.”
Only a handful of Sedalia residents have been diagnosed with dysautonomia, but according to DysautonomiaInternational.org, more than 70 million people worldwide live with various forms of the disease, impacting people of any age, gender or race.
Katie Wurtz began seeing symptoms of dysautonomia when she was four months pregnant with her son Kaden, now 7. However, it took several years to get a proper diagnosis, which can be a common problem.
Valtos said Wurtz’s body has “basically attacked her own background nervous system,” and that she has one of the most severe forms of dysautonomia. There is no cure for the disease, but there are treatments — some experimental — that can help ease symptoms.
“If the heart rate isn’t able to be controlled we might put a pacemaker in,” Valtos said. “We teach people how to use a catheter. We give them medicine to make food move through the body faster, if it doesn’t naturally do it. If they’re dizzy and pass out a lot we give IV fluids to increase the blood pressure.”
For Wurtz, dysautonomia causes her blood pressure and heart rate to flucuate, plus she has chronic fatigue and frequently passes out. Her dad, John Evans, director at the Sedalia Regional Airport, said she was doing fine for about the last year, but her symptoms recently started flaring up again.
During the last week or so alone, Wurtz said she passed out 12 times, which prompted her recent stint at Barnes Jewish Hospital in St. Louis. She will be there for the next few days to finish receiving immunotherapy, an experimental treatment with a 50 percent success rate.
“Hopefully it will work as far as helping me maintain everyday life activities,” Wurtz said by phone from her hospital room Tuesday. “It’s hard. I can’t be the mother I want to be, the friend I want to be. … I feel like a burden some times, even though they take care of me and are there for me, but I feel like a burden because they have to help me with raising my son and cleaning up, everyday activities. People don’t think about the little things, every little detail in your life that is hindered by this disease and what it can do.”
The immunotherapy is given to Wurtz through an IV, similar to chemotherapy. To help her through this stage of her illness, Wurtz’s mom and dad are staying in St. Louis for the week to support her and care for Kaden, and they haven’t been the only ones to offer support.
Wurtz’s church, First United Methodist Church, has been a source of help for her family, as has the staff at Skyline Elementary where Kaden attends first grade.
“The community has been wonderful,” Wurtz said. “The school where my son attends at Skyline, (Principal Kelly) McFatrich and (counselor Teresa) Eads, they have been wonderful for my son. It hasn’t been easy on him when I’m in the hospital. He can get upset easy, so they’ve helped him pull through on hard days. There was a day where it was donuts with mom. I couldn’t be there because I was in the hospital, so they stepped up to the plate and played mom for me and had donuts with him.
“My church has been a wonderful support. My pastor Jim Downing and the Bible study group I attend, all the ladies have been prayer warriors for me. They text me and check in with me, even if it’s the middle of the night.”
That support has continued to grow. Mayor Steve Galliher, surrounded by Valtos, Eads, McFatrich, Downing and others, signed a proclamation Tuesday morning declaring October as Dysautonomia Awareness Month in Sedalia to coincide with the national observation.
“I was happy for her. She’s had a lot of struggles,” Valtos said of the proclamation. “There’s a couple reasons: hopefully people understanding the problem a little bit better. (Doctors) may see other patients that have this, recognize it sooner and get them quicker treatment. For Katie personally, it’s a chance to tell her story, help people understand the struggle she’s had. … It’s nice for the mayor to take time to make a proclamation.”
Although Wurtz and her family weren’t able to attend, Downing made a video to send to her. Evans said Wurtz teared up when she watched the video from her hospital bed: “It really made her proud, to have everyone backing her; they know what she’s been through.”
“I was so proud of our community for coming together for that,” Wurtz said. “The proclamation wasn’t about me, it was about getting the word out and getting people to recognize the fact it is a very real disease and I wanted people in Sedalia to realize, maybe someone would see this and think, ‘I might have this,’ because there’s so many people misdiagnosed; it took me even several years to get diagnosed.
“… (Downing) sent me a video of the proclamation and it was just tears of joy coming down my face when I saw the video. My friends were there, councilmen I didn’t even know were there for the picture. … They didn’t have to do that, take time off work to do that, but they did. I was just very proud. … I’m hopeful the word spreads about this disorder. Even if we reach just one person in our community, we’ve reached someone and we can make a difference.”
For more information about dysautonomia, visit DysautonomiaInternational.org.
Nicole Cooke can be reached at 660-826-1000 ext. 1482 or @NicoleRCooke.