GREENFIELD – Whitnall Middle School’s carnival raised over $3,000 for Dysautonomia International, making a substantial impact on research efforts and spreading awareness in the community.
The carnival, held Friday, May 5, attracted families, students, and other community members. Though no official attendance was taken, the students were very pleased with how many people showed up to support the cause.
“We had many families show, as well as others from all over the community,” said Elizabeth Jesse-Johnson, one of the carnival’s main organizers. “It was so much more than I had expected. We had more games, more fun, more prizes, more contests, more everything.”
Related: What is dysautonomia?
Since dysautonomia–a variety of illness affecting the autonomic nervous system–is widely unknown, the goal of the carnival was to make the illness a part of the community vocabulary.
According to Dysautonomia International President Lauren Stiles, it’s events like this that are helping raise awareness all over the country.
“They can be so helpful for that family that’s dealing with it who sees that their community supports them,” said Stiles. “It can be very isolating to have an illness that no one’s ever heard of, especially when you’re a young kid.”
The carnival’s impact even went beyond the Whitnall community.
Stiles said that after they posted one of South Now’s stories about the carnival on their Facebook page, a teacher in New York City contacted them saying her class wanted to put on a similar event, since one fourth grade student had a mother who was diagnosed with a form of dysautonomia.
Closer to home, Stiles also mentioned that this event might help others with dysautonomia find support groups.
Just this past April, Dysautonomia International launched a support group in the Milwaukee area, with around 180 people attending. Since so many people are estimated to have some form of dysautonomia–around 70 million people worldwide–it’s likely there are many more people in Wisconsin looking to connect with others about their illness.
In addition to spreading awareness, all the money raised from the carnival will be donated to Dysautonomia International’s research fund, where 100 percent of the funds will be put toward research efforts studying Postural Orthostatic Tachycardia Syndrome (POTS), one common form of dysautonomia.
“We have a study we are currently raising money for to look at genetic mechanisms in POTS that we hope will lead to the development of a blood test to help diagnose POTS,” explained Stiles. “This study is really different than anything that’s been going on the in the US for POTS research before. We are excited to understand what causes POTS, and when we do understand what causes it, we can treat it better.”
According to very recent research Stiles cited, around 70 percent of POTS patients are misdiagnosed at some point. This problem is, in part, due to the fact that doctors are unaware of the illness. Dysautonomia International has programs to help educate doctors about the illness, which Stiles says is a major need.
“There’s a huge need for additional physician training on POTS so our patients can get diagnosed faster and have access to treatment once they are diagnosed,” Stiles said. “Maybe there’s even a future physician at Whitnall Middle School. We hope so.”
With so many people attending the carnival and hundreds of students learning about dysautonomia during a school assembly, it’s very likely that the news of dysautonomia reached a doctor, or future doctor.
However, any awareness is helpful, and to patients with the illness, it’s invaluable to have your invisible illness be seen.
“One of the hardest things about having dysautonomia is the fact that it is invisible and people don’t see it,” said Elizabeth-Jesse Johnson. “But thanks to this event and the community, it’s now a little bit less invisible.”
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