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Tina Ceroni is one of only two patients who has received a stem-cell transplant and gone into long-term remission from the rare “stiff person syndrome.”

Scientists at the Ottawa Hospital Research Institute have made a breakthrough in successfully treating a rare and debilitating neurological disease known as stiff person syndrome, which leaves afflicted people standing like tin soldiers, unable to move their bodies normally.

A team led by Dr. Harry Atkins, medical director of the Regenerative Medicine Program and scientist at the Ottawa Hospital Research Institute as well as a physician in the Blood and Bone Marrow Transplant Program at The Ottawa Hospital, has succeeded in putting into remission two patients who suffered from the extremely rare autoimmune disease, which is characterized by stiffness of the muscles and painful muscle spasms. In extreme cases the disease leaves people bedridden.

The team has stopped the disease from progressing in two women – helping them to regain their previous function and leaving them well enough to return to work and normal everyday activities. It is the first documented report that taking stem cells from a person’s own body can produce long-lasting remission of stiff person syndrome.

“When I see such a dramatic improvement in someone’s quality of life, it always seems a bit like a miracle,” said Dr. Atkins, who took stem cells from each woman’s body, used very strong chemotherapy to destroy their immune system and transplanted the stem cells back, allowing a new immune system to grow that doesn’t attack the body. But he is quick to add that they “approach these cases very carefully because the treatment has significant side effects. We are also aware that there have just been a few patients treated and followed for a short time.”

Tina Ceroni of Toronto had the stem-cell transplant and said it has given her back her life. The 36-year-old fitness trainer started getting severe symptoms in her late 20s. Initially she was diagnosed with hyponatremia, or low blood sodium, thought to be related to her training for a half-ironman competition. But while water-skiing at a friend’s cottage, she had to be helped from the water because she was unable to move. But now, her symptoms have disappeared.

“This transplant was a gift of life, literally,” said Ms. Ceroni, who ran a half-marathon in January. “Dr. Atkins and the team at The Ottawa Hospital are the most extraordinary group of people and I just can’t express my gratitude in words. I’m so thankful.”

Read the media release and the case study published in the medical journal JAMA Neurology.

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