Stiff person syndrome

She was diagnosed with a disease that’s rare, one in a million in fact. And her treatment was equally rare. 36-year old Tina Ceroni is the second person in the world to undergo a stem cell transplant to fight Stiff Person Syndrome. Maria Hayes reports.

Tina Ceroni: “A nurse at that time said it looks like you could possibly have MS. So that triggered something in my brain to think OK, this is more serious than I anticipated.”

She was in the midst of training for a half-ironman. But life long athlete Tina Ceroni began having muscle cramps, spasms and rigidity in her legs. She thought she might be over training. Then the worst attack at a friends cottage landed her in hospital.

“I endured eight hours of severe muscle contractions and rigidity just in the lower half of my body. So the muscles continued to contract, contract with no ability to relax.”

It took multiple tests over two years and a consultation with a neuro muscular expert in the UK before Tina was diagnosed with Stiff Person Syndrome; an autoimmune disease that was progressive and unpredictable.

“The triggers for SPS are such common everyday life experiences. Emotion, being startled, stress in your life, cold temperatures.”

The symptoms progressed to include her upper body and eventually her respiratory system. This once vibrant, energetic, fitness consultant began living in isolation.

“It took everything away from you in every aspect. Not only physically but emotionally and mentally. So you started to lose control of everything.”

Not responding to therapy, Tina’s future was questionable. Then, an Ottawa researcher considered the Burlington woman for a clinical trial, a stem cell transplant.

“They wanted to build stem cells in my bone marrow so they could extract those stem cells. Purify them and then reboot those stem cells back into my system.”

She describes it as the most difficult experience of her life. Weighing heavily on physical, emotional and psychological levels. Three months in an Ottawa hospital, taking multiple rounds of medication including chemotherapies.

“The process of it is not easy. They essentially take your body and your immune system down to zero.”

It was a grueling treatment. But today, Tina describes it as a miracle.

“Over the course of 2-years I’m considered to be symptom free and I’m considered to be in remission. So the success is 100%.”

Not surprisingly, she’s now an advocate for stem cell research. And counsels those facing stem cell transplant.

“I just knew I was being given this gift of life again. And to be accepted for the transplant is by far the biggest gift I could ever be given.”

Tina Ceroni is determined to give back. She’s holding a fundraiser on October 25th in Burlington to honour the specialists who’ve given her a second shot at life and to raise dollars for further stem cell research. Ticket information for the event “Share a Cell” can be found at www.shareacell.com

2 COMMENTS

  1. I was amazed to have heard about this story I have recently diagnosed with ALS.
    It is progressing slowly which is a positive but the case is I am to die .
    I am 59 years old always had an active life always healthy until 2 years ago when everything went downhill
    I would like to inquire about the facility in Ottawa and the doctors name
    I would greatly appreciate the info
    GOD BLESS YOU

  2. Did you see or hear the condition “scleroderma” mentioned in any of your stem cell research? Scleroderma has also been coined “the human stone” syndrome, which has some similarities to SPS.

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