POTS in spotlight at Will’s Carnival for a Cause

LAUREL — Stormy weather Saturday bypassed Will’s Carnival for a Cause staged at Chick Berry Farms between Millsboro and Laurel.

Dozens of homemade games, a silent auction with 110 items and many other fun-filled activities were in store for patrons who attended the third edition of the carnival founded by Gumboro teen Will Kenney.

Combined, Will’s carnivals in 2014 and 2015 raised more than $15,000 for Sturge Weber research as well as promoting awareness. Will’s connection: a friend of the family, Stella Hastings, a little Millsboro girl who has a mild form of Sturge Weber.

This year’s event also embraced POTS – Postural Orthostatic Tachycardia Syndrome, an autonomic nervous system disorder that is a form of dysautonomia.

Former Selbyville resident Crystal Caldwell, who now lives in Ocean Pines, and Rita Chandler of Gumboro know all about POTS all too well. They have it.

POTS is characterized by malfunctions of the autonomic nervous system that controls everything such as heart rate, blood pressure and pupil dilation.

“People with POTS and dysautonomia have a hard time controlling all of that stuff. Some people with POTS can’t stand for long periods of time,” said Ms. Caldwell, an active advocate for POTS awareness. “Every case is different.”

Accurate diagnosis is often difficult, they say.

“I started passing out in the second grade. And I wasn’t properly diagnosed until I was 20 years old,” said Ms. Caldwell. “It can be four to six years to get properly diagnosed due to lack of awareness. And the average POTS patient will see seven doctors before they get diagnosed.”

“I was diagnosed three years ago with a tilt table test,” said Ms. Chandler. “I was really sick six months to a year; I was bed-ridden in a wheelchair.”

“I was bed-ridden for a year and a half, almost two years,” said Ms. Caldwell.

“I see a specialist in Columbia. Md., that actually specializes in POTS syndrome. They think I had it since childhood,” Ms. Chandler said. “I never ever felt good as a child and the older I have gotten the worse I started feeling.”

“I did 15 years in banking and eight years in the medical office field. I tried to switch part-time. I have been disabled,” said Ms. Chandler. “Basically my day doesn’t get started normally until noon or 1 or 2 o’clock because it takes me that long to get my blood pressure up. I basically live off anything with salt, salt and more salt.”

“You increase your salt intake to help with the blood pressure,” said Ms. Caldwell. “I take salt pills. I put salt on anything and everything. Salt is my best friend.”

They were actively involved in preparing and volunteering for Will’s Carnival for a Cause.

Ms. Caldwell monitored a POTS awareness/information booth. She is grateful the carnival afforded a public opportunity to spread the word, like it has for Sturge Weber syndrome.

“It is exciting because it brings more awareness, especially in this area. I know five or six people that live in Sussex County that have POTS and have to travel so far to see doctors,” said Ms. Caldwell, who had Will’s mother, Sandy Kenney, as her Pop Warner cheerleading coach. “So hopefully this brings awareness to more doctors in this area as well.”

“Will kind of feels like everybody knows about Sturge Weber now,” said Ms. Kenney. “He wanted to get the other one out there, and we are not as knowledgeable about that one.”

The monetary tally from Saturday’s carnival is $7,206. It will be split evenly between the Sturge Weber Foundation and Dysautonomia International.

It had been announced that this would be the third and final Will’s Carnival for a Cause. There could be a change of heart.

At Saturday’s event, Will, who was honored this past spring in Washington, D.C., with The Prudential Spirit of Community Award as one of the nation’s top young volunteers, saluted his family, friends, businesses and the small army of volunteers who have helped make the carnivals a success.

News Editor Glenn Rolfe can be reached at grolfe@newszap.com

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