It's called POTS — postural orthostatic tachycardia syndrome, a form of a disorder called dysautonomia. It sounds daunting and it is. It's also something with which Rumson-Fair Haven Regional High School junior Emily Walsack has had to live.
And her mom, Jamie, along with friends and family, has been trying to raise awareness of the disorder, support for her daughter and funding for more research and a cure. As part of that process, George Sourlis has organized a Saturday double-header basketball benefit at R-FH in honor of Emily: first, the girls will play Red Bank Regional High School at 1 p.m.; and then the boys will play Middletown South at 3 p.m.
"We will sell t-shirts, have a 50/50, free throw contests, offer information about POTS and more," Jamie said.
Why a basketball benefit? A former avid "hoopster," Emily's POTS was triggered by a hip injury she got from playing basketball, a sport she loved and can no longer play, along with field hockey and lacrosse.
The disorder makes it infeasible for athletes to continue playing. That's because dysautonomia, Jamie explained in an email, "is a medical term that describes a malfunction of the autonomic nervous system. This system controls many of the body's functions such as heart rate, digestion, and blood pressure. There are a number of forms of dysautonomia, Emily's is (the) POTS."
Described as a "young person's disorder," people who suffer from POTS experience heightened heart rate when standing. When the heart rate elevates, they become lightheaded and get palpitations. In tandem, some experience a blood pressure drop and can pass out. In Emily's case, the symptoms are accompanied by the pain and border on incapacitating.
Because of the version of POTS she has, Emily's pain is relentless and hones in on primarily her legs and stomach. "She is unable to stand or walk for long periods of time, is nauseous much of the day, and dizzy," Jamie said.
Women are four to five times more likely to develop POTS than men, according to literature on the disorder.
The illness has been especially debilitating for Emily, in light of her love of sports. She cannot attend full days of school and must get home instruction in three classes. In spite of it all, her mom says, her spirit of vitality is strong and she "does not complain, because she doesn't want anyone to feel badly."
An integral part of the battle is being forearmed with information, Jamie said, cautioning that "this syndrome is misdiagnosed often and needs attention."
So, the Walsacks encourage people from the community and surrounding area to attend the games and enjoy them while learning a little more about POTS, supporting Emily and the cause and helping to spread awareness.
There will be a $5 cost to get in the games which will be donated to Emily's Angels, "a New Jersey non-profit corporation established for any donations we receive ... to be used to help us care for Emily and her POTS. A percentage will be donated to the Dysautonomia Youth Network," Jamie explained. "We are overwhelmed by the love and support!"