A few years ago, when Tina Ceroni first noticed the muscle tightness and cramping in her legs, she put it down to too much exercise. An accomplished athlete who ran a personal training business in Burlington Ontario, she was used to sore muscles. She never suspected that a rare neurological disorder called Stiff Person Syndrome (SPS) was beginning to take a vise-like grip on her life.
But as the attacks increased in frequency and intensity, constricting her whole body so forcefully that she feared her bones might snap, Tina realized something was seriously wrong. After a couple of misdiagnoses, doctors found she had won the one-in-a-million reverse lottery for SPS, a condition that can only be treated with palliative measures such as sedatives to unbind the ever-tightening muscles.
“I was a ticking time bomb,” says Tina, pictured at left. “Everywhere I went, there was a chance that I could have a life-threatening episode. I tried to keep active, but if I was out on the road cycling and had an attack I didn’t have the ability to use my phone and call someone. I wasn’t able to breathe. So I had to have someone with me all the time.”
Ordinary life stressors, such as loud noises or crowded, noisy rooms, could trigger attacks. So could emotional stresses: her muscles seized up at a friend’s funeral and she had to be taken to hospital.
At her worst, in 2010, she was having five to seven attacks a month, each time requiring paramedics to rush her to the emergency ward where doctors, now familiar with her condition, treated her with propofol, the strong sedative implicated in the death of pop star Michael Jackson.
Tina had to stop working, give up her driver’s licence and stay close to her supportive family. The vivacious, outgoing young woman’s future looked bleak.
But in remarkable ‘small world’ circumstances, she found a fellow SPS patient who had undergone a successful stem cell transplant treatment at Ottawa General Hospital under the care of Dr. Harry Atkins, stem cell researcher and bone marrow transplant expert.
For more than a decade, Dr. Atkins, pictured at left, has been treating Multiple Sclerosis with stem cell bone marrow transplants. More recently, he has been using the procedure for patients with other autoimmune conditions such as SPS, Crohn’s disease and neuromyelitis optica.
In essence, he collects stem cells from a patient and then purifies and fortifies them. The patient then undergoes an extreme course of chemotherapy treatments to all but annihilate their diseased immune system. The robust stem cells are then returned to them to rebuild a new — hopefully disease-free — immune system.
The treatment has shown remarkable results, stopping the progress of the patients’ autoimmune diseases. In some cases, patients enter into complete remission.
After consulting with Dr. Atkins, Tina underwent the grueling procedure — the chemotherapy leaves patients extremely weak and near death — in April of 2011. Now, approaching three years later, she is symptom-free. She has resumed her work as a fitness trainer and volunteers at Toronto’s Princess Margaret Cancer Centre, where one of her roles is counseling patients who are about to undergo transplant therapy.
“There are no limits; I’m doing everything I love. I can be in big groups and be around all my nieces and nephews, where before it was difficult because the fear of having an attack was a big concern. I can truly say I’m in remission right now. I feel so thankful.”
With her fear of crowds gone, Tina held an event she called Share a Cell in late October to raise awareness and funds for the Stem Cell and Bone Marrow Transplant (Program at the Ottawa Hospital. More than 200 family, friends and supporters contributed almost $37,000. Today Tina presented Dr. Atkins and his team with a cheque for the amount.
“Before this, I didn’t know much about stem cell transplants,” says Tina. “Now I know how stem cell transplants can change the future. I want to do what I can to raise awareness about stem cell research and what it’s doing for people and how it’s saving lives by affecting all different diseases and conditions.”