Medford walk raises money for little-known illness POTS
MEDFORD — Twenty-year-old Kailey Dolan woke up Saturday and, as she does every morning, did an inventory of pain: Her spine and neck throbbed, her knees and joints ached, she was wobbly when she stood. A good day.
And as she joined 400 other people on a dandelion-covered field in Medford for the POTS Walk and 5K Race, held to raise money for the little-known but devastating postural orthostatic tachycardia syndrome that has forever changed her life, something amazing happened: Dolan met a fellow sufferer.
“You have POTS?” Dolan asked, shock and joy spreading across her face. “I have POTS, too!”
A malfunction of the autonomic nervous system that can leave sufferers unable to function, POTS is estimated to affect between 1 million and 3 million Americans, most of them young women. It causes lightheadedness, fainting, tachycardia, chest pains, shortness of breath, and gastrointestinal problems, among other symptoms, according to Dysautonomia International, a charity that raises money for a cluster of medical conditions including POTS. A diagnosis of POTS takes an average of six years, and there is no known cure.
“I went from working a normal, full-time job to bedridden in a hospital in just about a week or two,” said Sarah Mendelowitz, a POTS sufferer and MIT graduate who organized Saturday’s 5K. “My life was totally gone. I had to go home and live with my parents.”
Mendelowitz, 34, has hosted the 5K twice before but it was never open to the public. This year, it was open and was dedicated to the memory of 17-year-old Christina Tournant, a freshman at MIT who suffered from POTS and committed suicide in March while home in Florida on medical leave.
“Reading about her life was like reading about my own,” said Mendelowitz, who did not know Tournant.
Some POTS sufferers endure months or years of misdiagnosis and doubt from medical experts and friends, accused of faking or imagining an illness that has no visible symptoms, said Dysautonomia International’s president, Lauren Stiles, and many at the 5K.
Strong bodies turn on frustrated and terrified owners — Mendelowitz played varsity soccer and basketball at MIT, but sat in a folding chair during the 5K. Stiles was a busy attorney and an avid snowboarder and surfer who woke up sick on Jan. 2, 2010, after a concussion and spent two years in bed searching for a diagnosis.
“It’s a lonely disease,” said Debbie Walls, who traveled from Washington, D.C., to walk for her 20-year-old daughter, who suffers from POTS.
Friends at the 5K said Tournant talked little about her illness, and was known instead for her infectious laugh and goofy Halloween costumes — once, she affixed a lampshade to her head and went as a tube of toothpaste.
Tournant started having symptoms when she was around 14 or 15 years old, said her mother, Tava Wilson.
The athletic, funny girl loved math so much that she spent the weekends in high school when she was too sick to go out doing calculus problems.
But it wasn’t until she came down with mononucleosis and then the flu in 2013 and 2014 that she crashed, Wilson said, losing 20 pounds and finally getting diagnosed in August of last year, right before she left for MIT to major in biomedical engineering.
She joined the swim team, but found her circulation so poor that she could not stay warm in the pool, so she began diving instead. She changed her diet, Wilson said, and for a brief period, she began to feel better.
But by late January, she started running fevers well over 104 degrees.
“Mom, I think my body has finally given up on me,” she texted her mother. Wilson brought her daughter home in February and started looking for a medical team. She was hopeful.
On March 5, Tournant texted her mother at 8:17 p.m. “I love you, mom,” the message read, followed by hearts. Then she jumped off the roof of a parking garage at Tampa International Airport. She was found at 8:25 p.m.
“I love you Mom. Thank you for being my best friend. I’m sorry I couldn’t keep fighting this,” read the note she left behind, Wilson said. Tournant signed it, “Your littlest dweeb” — the affectionate nickname mother and daughter volleyed back and forth with love.
“Knowledge is power, but she did not have the knowledge and understanding of what she was going through,” said Wilson. “To be able to see and hope.”
That knowledge is what Wilson hopes her daughter’s story can bring others.
On Saturday, Attorney General Maura Healey pledged to join the effort.
“I will do everything I can here in Massachusetts as the people’s lawyer to be an advocate and to raise awareness about POTS and these kinds of diseases,” said Healey, who said she was troubled that insurance companies were cutting testing for diseases such as POTS. “I pledge here in Massachusetts that I will work with insurance companies to make them aware of this.”
Dolan — who cannot remember what her life was like before intense nausea, excruciating pain, dizziness, and fainting overtook her life five years ago — finished the 5K in exactly one hour. She will pay for this on Sunday, she said. But on Saturday morning, she sat in sunshine on the grass next to a bend in Mystic River and cried with relief at finally being recognized.
“I’ve never met another person with POTS,” she said, reaching for the words to describe a moment of sudden, unexpected belonging. “It’s nice. To see people. To just see the word. To have it spoken.”