Active Teen Gets Her Life Back after Discovering POTS
What do you do when you go from being an active kid to unable to walk? What do you do when doctors think the problem is mental, but you know something physically wrong? You keep trying, and you keep fighting.
That’s what Christina Corturillo of Niles did. “I had occasional bouts of feeling lightheaded and dizzy with low blood pressure,” she said. “I got mono in 7th grade and then, all of a sudden, the lightheadedness symptoms didn’t go away.”
Christina excelled in baton twirling and cheerleading. But as her episodes of dizziness, rapid heartbeat and joint pain worsened, she had to stop the activities she loved. Christina saw several doctors and received many potential diagnoses. “One doctor said it was irritable bowel syndrome, another said it was a teenage growth spurt,” she recalled. “We saw doctor after doctor, and they couldn’t find the cause of the problems. They wondered if it was all in my head. I knew I wasn’t doing it to myself – but I was so depressed that we couldn’t find an answer.”
Christina received a possible diagnosis of postural orthostatic tachycardia syndrome (POTS). It’s a condition that affects blood flow – with symptoms including lightheadedness, a fast increase in heartbeat and fainting. Doctors treated Christina for POTS with a higher-sodium diet and increase in fluids. With only minor improvements in lightheadedness and worsening joint pain, she could no longer be physically active. She even had to quit attending school, starting home schooling in January 2016.
“We went through a grieving process,” Christina’s mom, Kathy, said. “We had this whole different life with Christina’s activities. Then she got so weak that she couldn’t even wash her hair.”
At a POTS support group in Cleveland, an acquaintance referred Christina and her family to Colleen Handwork in the Akron Children’s Hospital Heart Center. Colleen, a certified pediatric nurse practitioner, works with kids and teens referred to the syncope clinic for fainting-related issues.
“Christina came to the syncope clinic with a 1-2 year history of dizziness, rapid heartbeat, head ‘heaviness,’ and numbness and tingling of extremities,” Colleen recalled. “The first time I saw her, she used a wheelchair for mobility.”
Colleen performed a tilt table test, simulating the change in position from lying down to standing up, while evaluating Christina’s cardiovascular response to the change. “Colleen is well-trained and knew what to look for,” Kathy said. “For the first time in a long time, we had hope.”
The tilt table test showed results consistent with a POTS diagnosis. Christina started on medication to keep her blood pressure up, steroids to help her retain fluids and beta-blockers to slow her heartbeat. “I have seen Christina for almost two years, and she’s made huge improvements,” Colleen said. “She now experiences minimal dizziness and tingling – and her ‘brain fog’ has lifted.”
The Corturillo family is grateful to Colleen for helping to restore Christina’s health. “Our expectations were so low when we got to the syncope clinic, but Colleen believed in us,” Kathy said. “Colleen gave my daughter her life back.”
Christina had to give up tumbling and cheerleading, but she has new priorities in life. “I loved working hard and reaching goals in my extracurricular activities,” she explained. “I had to give up a lot, but now I can focus on academic goals. I feel more focused at school now, and I’m a member of the National Honor Society.”
Christina looks forward to starting her final year at Niles McKinley High School in August. She’s having senior pictures taken this summer, and she’ll be on the drill line for band. After all of the setbacks and trials she has endured, her path in life is clear. “I want to volunteer at Akron Children’s Hospital in Boardman and then go to college to become a child life specialist,” she said. “I know how hard it is to be sick. I want to help kids and their families.”
A 20-year ER nurse turned nurse practitioner, Kathy overcomes provider burnout with empathy. “Christina’s illness was a learning experience for all of us. It changed my perspective on how a diagnosis not only affects patients but their families as well,” Kathy offered. “I also have taken this opportunity to educate my colleagues on dysautononia – an umbrella term to describe several conditions including POTS – because it’s generally a poorly understood problem.”
Seeing improvement in patients like Christina is why Colleen finds her job so rewarding. “Treating POTS can be a long road, and you feel the frustration along with the patients and families,” she shared. “You wish you could predict how every child will respond to treatment in the syncope clinic. And you wish everyone could improve as much as Christina has.”
Many patients with Ehlers-Danlos Syndromes also experience POTS.