Open Dialogue

Patient Tina Ceroni Tells the CAHO Catalyst How a Stem Cell Transplant Saved Her Life

Struck by a rare autoimmune disease characterized by life-threatening muscle stiffness and spasms, Toronto’s Tina Ceroni underwent a stem cell transplant at The Ottawa Hospital that chased the disease into remission. She tells her story to the CAHO Catalyst.

The year before she underwent a stem cell transplant at the Ottawa Hospital Research Institute, patient Tina Ceroni, suffering from a rare brain disease called ‘stiff person syndrome (SPS)’, was rushed to the hospital no less than 47 times. The muscles that control her respiratory tract kept going into spasm leaving her in life-threatening respiratory distress.

This novel application, undertaken by Dr. Harold Atkins and the multidisciplinary team of The Ottawa Hospital’s Blood and Marrow Transplant Program, extracts stem cells from the patient’s own body, uses chemotherapy to eliminate the immune system and then transplants the purified stem cells back, allowing a new immune system to grow. It has given Ceroni her life back.

She spoke with the CAHO Catalyst about her journey from a life of crippling debilitation to full remission, courtesy of one remarkable new procedure.

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Dr. Harold Atkins, Ottawa Hospital Research Institute, and stem cell transplant patient Tina Ceroni. Photograph courtesy of Tina Cerona.

Let’s go back to the beginning of your journey, when did you first start showing symptoms of this rare autoimmune disease, stiff person syndrome?

I first started feeling symptoms when I was around 28, in 2005. I was training for a Half Ironman competition. I started feeling symptoms of rigidity, spasms and cramping in my lower legs, which I attributed to my training regime. At this time, I saw a doctor at McMaster University Medical Centre and he initially diagnosed me with hyponatremia ‒ a condition that occurs when the level of sodium in your blood is abnormally low ‒ thinking that my body’s electrolytes were affected by my exercise routine.

The following summer, I was waterskiing at a friend’s cottage and my legs seized up to a point of full rigidity and stiffness. I lost the ability to move my legs; the muscles continuously contracted. My friends had to pull me out of the water.

I was rushed to a hospital where I endured about eight hours of severe cramping to the point, quite truthfully, that I thought a bone could snap or a tendon could rupture. The doctors treated me with sedation drugs and morphine, and after a number of hours my muscles finally relaxed.

How did the disease progress over time? And please explain what led to the diagnosis.

After that first incident at my friend’s cottage, the disease started to progress very rapidly. The muscles were not only constricting in my legs, but also in my entire body ‒ even the muscles in my respiratory system, which meant breathing became nearly impossible.

That first episode at my friend’s cottage initiated a much more serious investigation. I went back to McMaster, and saw a second doctor there. It took some time to get diagnosed, as I was first diagnosed with neuromyotonia ‒ a rare neuromuscular disorder, kind of like the ‘cousin disease’ of stiff person syndrome.

Ultimately, the diagnosis of stiff person syndrome was made by Dr. Steven Baker in the neurology department at McMaster, together with another doctor from the U.K. It was 2007, and I was 30 years old.

You were rushed to the hospital 47 times in the year prior to the stem cell transplant. Help me to understand how difficult things were prior to the stem cell treatment. I think it’s hard for anyone to imagine how profoundly this affected your life and that of your family.

It was a very scary time not only for me, the person living with the disease, but also for everyone in my family, everyone who cares about me, all my supporters and friends. It profoundly affected all of our lives because these episodes that I was experiencing became life threatening.

The triggers of the disease can be anything from ordinary life stressors, typical emotions, loud noises, crowded areas or being startled. In these episodes, my whole body would seize up in one to two minutes, and this would soon affect my respiratory system. Someone would need to be with me, to monitor me, at all times. Someone needed to call the paramedics. I needed to be rushed to the hospital, very quickly, and given high doses of sedation drugs.

I ended up having to move out of my apartment in Toronto, and back in with my parents. I had to give up my own business as a personal trainer. My driver’s license was also taken away because of the severity of my disease.

What makes this disease so devastating is that it affects you physically, but it also affects you psychologically and emotionally. I lived a life of unpredictability, isolation and fear. I started to withdraw from loud spaces or crowded areas. My hope for a positive future was very bleak.

How would you describe the difference this stem cell treatment, undertaken by Dr. Harold Atkins at the Ottawa Hospital Research Institute, has made to your life?

It’s really hard to describe what it feels like to have my life given back to me. I am in complete remission; I’ve had no symptoms of the disease for the last two years. So my life, and that of my family, has profoundly changed in the most positive way.

I’m back at work. I’ve been able to participate in life again. Now I don’t have to live a life of fear or worry. The transplant literally saved my life.

I am incredibly grateful for what Dr. Atkins and The Ottawa Hospital have done for me. It’s remarkable in every sense of the word.

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Dr. Harold Atkins, the Ottawa Hospital Research Institute (OHRI). Photo courtesy of OHRI.

What are your impressions of Dr. Atkins and his team at The Ottawa Hospital?

I received world-class care at The Ottawa Hospital. Dr. Atkins and the transplant team there – the nurses, the staff, everyone involved at The Ottawa Hospital – are the most extraordinary and special people. I’ll never forget what they’ve done for me.

Dr. Atkins’ brilliance is evident but his extraordinary way of showing compassion, care and empathy for my situation was truly amazing. I am thankful, every day, for Dr. Atkins’ dedication and devotion to bettering peoples’ lives. I am grateful to the core.

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Inspired by her experience, Ceroni founded an organization, Share a Cell, to raise awareness and funds for stem cell research as well as support the Blood and Bone Marrow Transplant program at The Ottawa Hospital.

To read the sister story in the Catalyst, about Atkins’ breakthrough, go here: http://bit.ly/1vRlBZJ.