Elyza Bolanz was doing online school before there was a pandemic. She wanted to be in school with her friends and teachers, but her body simply wouldn’t let her.
Equally as frustrating, multiple doctors were enlisted for help for her complex diagnosis and treatment plan before she finally got some relief.
Sadly, Elyza’s story mirrors that of many of children with the dysautonomia condition known as POTS, or postural orthostatic tachycardia syndrome. Dysautonomia is an umbrella term for neurological disorders that affect the nervous system. POTS is a common form of the disorder.
On Oct. 1, Akron Children’s Hospital will be lit in turquoise in honor of Dysautonomia Awareness Month.
With POTS, every case is different
“Make some noise for turquoise,” said Elyza’s mother, Darcy Bolanz, who has advocated for her daughter throughout her nearly 8-year battle with POTS. She also advocates for others through volunteer roles on Dysautonomia International’s state support group.
“We have to raise awareness and speak for these patients because they’re missing out on a lot,” Darcy said.
What makes POTS difficult to treat, she said, is that every case is different.
Dr. Steven Spalding, division director of Rheumatology and vice president of Population Health, agrees. He said there are a lot of different causes of POTS and not a lot of them are easy to identify.
“Elyza’s case is complicated because she also has an underlying autoimmune disease called Sjogren’s syndrome, that contributes to her POTS,” Dr. Spalding said. “I’ve seen a lot of kids with POTS and a lot of kids with Sjogren’s, but she’s the first one who I’ve seen with both.”
So severe she couldn’t attend in-person school from 6th to 11th grade
Elyza started showing symptoms at a young age but initially didn’t let it get her down, her mother said. She was an honor roll student and was active in swimming and softball. Symptoms ranged from headaches and fatigue to a rapid heart rate and circulation issues in her legs.
In 4th grade the symptoms worsened. By 6th grade she could no longer attend school. She studied online through the 11th grade.
“One time I was rubbing her back at bedtime to comfort her and I could hear her heart,” Darcy said. “I checked her resting heart rate and it was in the 140s and 150s.”
Elyza says it’s very taxing to be so tired daily and have pains all over her body.
“Whenever you stand up you get a sudden rush of dizziness and have to sit back down,” she said. “The headaches and migraines are the worst, especially when you’ve been dealing with them since you were 9.”
Ahhhh, finally some relief
An intravenous drug treatment called subcutaneous immunoglobulin (SCIG) was recommended by a specialist in Arizona in October 2019. Dr. Spalding agreed to try it. Elyza has responded so well that she would have been ready to go back to school for her senior year at Carrollton High School … if not for COVID-19 making it too risky for her.
“We got our little girl back,” Darcy said. “It’s enjoyable to see her experience the simple things in life like going outside for a walk that had been taken from her.”
Dysautonomia by the numbers
Courtesy of Dysautonomia International:
- Between 1-3 million Americans have some form of dysautonomia
- It affects 1 in 100 teens
- Roughly 90 percent of POTS patients are female, most between the ages of 12-50
- 25 percent of POTS sufferers are so disabled they cannot work or attend school