The Oneida Daily Dispatch (Oneida, NY)
Dysautonomia Awareness Month
Madison County has declared the month of October to be Dysautonomia Awareness Month.
WAMPSVILLE, N.Y. >> To raise awareness and support, the Madison County Board of Supervisors have declared the month of October to be Dysautonomia Awareness Month.
“Dysautonomia impacts people of any age, gender, race or background,” Board of Supervisors Chairman John Becker said. “Including many individuals living in Madison County. It can be a very disabling and this disability can result in social isolation and financial hardships.”
Dysautonomia is a catchall termfor a number of different medical conditions that cause a malfunction of the autonomic nervous system.
Kevin Gagen, once a fellow classmate of Becker’s, had reached out to Becker and asked for his help. Kevin’s 22-year-old daughter, Caitlin, was diagnosed with dysautonomia and he wanted to raise awareness. Both were in attendance at the Madison County Board of Supervisor’s meeting on Oct. 9 to share Caitlin’s story.
“Up until three and a half years ago, we had no idea what this was. Caitlin got sick in her senior year of high school,” Kevin said. “After she got sick with a virus, she couldn’t complete a full week of school.”
Caitlin was told for a year that she had chronic fatigue syndrome or Crohn’s disease, impacting her life. Caitlin loved sports and her passion was to play college soccer, but Caitlin never felt 100 percent. Still, she worked hard and was accepted to go to SUNY Plattsburgh to play college soccer, despite what doctors said.
“We were told she couldn’t play, that she couldn’t stay home,” Kevin said. “Caitlin could barely run a sprint on a soccer field, but she refused to listen to her doctors and pushed herself. And she became a four-year starter.”
Before her diagnosis, Caitlin said she felt hopeless.
“People were saying it was just chronic fatigue syndrome,” Caitlin said. “I knew it was something more. Then we found this doctor who diagnosed me. And while it’s a terrible condition, I felt relieved that it was something and not just in my head.”
Kevin said it can take five to seven years for someone to get a dysautonomia diagnosis.
“Many times it’s overlooked. We were lucky. Caitlin wrote a letter to a U.S. soccer woman who had chronic fatigue to try and motivate her,” Kevin said.
Kevin said they were told that if Caitlin has this, she has to stop playing soccer. The soccer player told Caitlin to contact a doctor at John Hopkins and do whatever he tells them to do.
“I wrote hima letter and the doctor wrote back an email in 24 hours,” Kevin said. “He said he felt Caitlin has a form of dysautonomia called POTS.”
An estimated 1 out of 100 teenagers and a total of 1,000,000 to 3,000,000 Americans are impacted by Postural Orthostatic Tachycardia Syndrome. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
Kevin said Caitlin had to take two pills every morning to get out of bed and couldn’t cool down with her team after running in an ice bath, because her body can’t regulate it’s temperature well. But despite all that, Caitlin is playing soccer and pursuing her dream.
Caitlin recently grad- uated from SUNY Plattsburgh with a bachelor’s degree in social work and now she’s pursuing her master’s degree at Keuka College. Her goal is to be a social worker at a school.
“Hopefully from this, we can spread the word and maybe one or two more young people won’t be misdiagnosed and won’t have to wait five to seven years to know what’s wrong,” Kevin said.