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Ingrid Steppan was told to go home and spend time with her family, that there was no cure for the rare and debilitating disease racking her body with convulsions, and that she would likely die from it.
But the 53-year-old mother of six children didn’t give up. That was in 2008. Today, she is recovering from a groundbreaking stem-cell transplant that she hopes will put her disease — called Stiff Person’s Syndrome —into remission and let her begin to live a life that a few years ago she simply couldn’t imagine.
She has put her wheelchair and walker away, and she has a remarkable story to tell about the lengths to which she and her family went to find treatment for the neurological disease, including moving across the country from interior British Columbia to Ottawa.
“This is the Vatican City of health care in Canada,” she says of Ottawa. “It is amazing what you have here.”
Stiff Person’s Syndrome is a disease marked by muscle rigidity, spasms, frequent falls and a “tin soldier’s gait” that affects an estimated one in a million people.
Steppan is the third person with the rare condition to undergo an autologous stem-cell transplant (using their own, purified cells) at The Ottawa Hospital. The treatment was pioneered by Dr. Harry Atkins, a bone-marrow transplant specialist, and a team of scientists from the Ottawa Hospital Research Institute.
Atkins, who was working on stem-cell transplants as a treatment for other auto-immune disorders, knew nothing about Stiff Person’s Syndrome when a patient with the disease contacted him and pleaded with him to perform a stem-cell transplant on her. After careful research, he agreed.
Atkins said he was particularly struck by one of the patient’s comments: That many people with the disease commit suicide because it is so horrible to live with.
“That really stuck with me,” he said, “their lives are really affected in ways you can’t imagine.”
On Monday, Atkins and his team published case studies of the first two transplants in the prominent Journal of the American Medical Association. The results — both cases are now in remission — are being called a breakthrough and are garnering Atkins and his team attention from people outside Canada seeking treatment.
Atkins is cautious about claiming too much. The future is still uncertain for the patients in the case study, but they are in remission and have been able to resume normal lives.
“We approach these cases very carefully and are always aware that there have just been a few patients treated and followed for a short time,” he says, adding: “Seeing these two patients return to their normal lives is really every physician’s dream.”
That is what Steppan is dreaming about, too. It is too soon for all her symptoms to have disappeared — her stem-cell transplant took place earlier this year.
•••
Tina Ceroni’s story should give Steppan hope. Ceroni, who lives in Toronto, was the second person to be treated by Atkins with a stem-cell transplant. By the time the 36-year-old, a former kinesiologist and triathlete, received treatment, the disease had left her life in ruins. She started having symptoms in 2008 when she was training for a half Ironman triathlon, but thought it was an injury. But the disease progressed.
Eventually, she lost her fitness business, she could no longer drive and she was living with her parents because she could not be alone. Several times a month she was rushed to the hospital by ambulance after something as small as a loud noise or cold air triggered an episode of severe muscle stiffness in her legs, torso, abdomen and elsewhere that could be life threatening.
“It is tremendously difficult,” she said. “Your hope for a positive future is so bleak, the disease starts to chip away at you.”
Since undergoing a stem-cell transplant in 2011, Ceroni’s life has completely turned around. She calls it a miracle.
The former fitness freak has returned to that passion with a new vigour. “Now I feel like the possibilities are endless. I appreciate life so much and everything it has to offer.”
She is once again cycling and competing in triathlons. Next year she hopes to compete in an Iron Man triathlon as part of an effort to raise money for the Ottawa Hospital Foundation to support research and say thank you to Atkins and his team. Last year she presented Atkins with a cheque for $36,762 raised at a gala she organized. This year she hopes to raise more.
“I went to visit Dr. Atkins and meet the team and I was able to thank them. My gratitude for them can’t be expressed in words. What they are doing to change peoples’ lives is extraordinary. I wouldn’t be thriving today without Dr. Atkins and The Ottawa Hospital.”
•••
For Steppan, it has been a long journey from her first diagnosis.
She and her husband and children (they have six between the ages of 29 and 13) lived in Cranbrook, B.C., where her husband was a general contractor working for a company that built resorts, when she received a diagnosis that explained the painful and alarming symptoms she had been experiencing. She was told there was no treatment and no cure.
Steppan says she decided to buy a house in Saskatchewan (she bought it on Kijiji for $32,000) to spend her final years quietly with her family.
While there, she began receiving a treatment that improved the symptoms, but her doctor told her she needed to be in a bigger place where she could get more specialized health care.
They moved to Ottawa, where they had relatives, in hopes of improved treatment for Steppan. The first thing her neurologist told her was: “I know your disease and you will be fine.”
Steppan, her two youngest children and her husband now share an apartment close to The Ottawa Hospital. She can take a bus alone to the hospital; her children are in school; and her husband has a good job as a builder. She said her family would like to return home to British Columbia but it is too soon to say whether her disease, like the first two patients, will go into remission.
Still, she feels stronger every day and, like Ceroni, is having a hard time finding the words to express thanks for the new lease on life she has been given and relief from the disease that she says felt like “giving birth over and over again.”
When she next sees Atkins, she says: “I will cry.”
epayne@ottawacitizen.com
查看原文...
But the 53-year-old mother of six children didn’t give up. That was in 2008. Today, she is recovering from a groundbreaking stem-cell transplant that she hopes will put her disease — called Stiff Person’s Syndrome —into remission and let her begin to live a life that a few years ago she simply couldn’t imagine.
She has put her wheelchair and walker away, and she has a remarkable story to tell about the lengths to which she and her family went to find treatment for the neurological disease, including moving across the country from interior British Columbia to Ottawa.
“This is the Vatican City of health care in Canada,” she says of Ottawa. “It is amazing what you have here.”
Stiff Person’s Syndrome is a disease marked by muscle rigidity, spasms, frequent falls and a “tin soldier’s gait” that affects an estimated one in a million people.
Steppan is the third person with the rare condition to undergo an autologous stem-cell transplant (using their own, purified cells) at The Ottawa Hospital. The treatment was pioneered by Dr. Harry Atkins, a bone-marrow transplant specialist, and a team of scientists from the Ottawa Hospital Research Institute.
Atkins, who was working on stem-cell transplants as a treatment for other auto-immune disorders, knew nothing about Stiff Person’s Syndrome when a patient with the disease contacted him and pleaded with him to perform a stem-cell transplant on her. After careful research, he agreed.
Atkins said he was particularly struck by one of the patient’s comments: That many people with the disease commit suicide because it is so horrible to live with.
“That really stuck with me,” he said, “their lives are really affected in ways you can’t imagine.”
On Monday, Atkins and his team published case studies of the first two transplants in the prominent Journal of the American Medical Association. The results — both cases are now in remission — are being called a breakthrough and are garnering Atkins and his team attention from people outside Canada seeking treatment.
Atkins is cautious about claiming too much. The future is still uncertain for the patients in the case study, but they are in remission and have been able to resume normal lives.
“We approach these cases very carefully and are always aware that there have just been a few patients treated and followed for a short time,” he says, adding: “Seeing these two patients return to their normal lives is really every physician’s dream.”
That is what Steppan is dreaming about, too. It is too soon for all her symptoms to have disappeared — her stem-cell transplant took place earlier this year.
•••
Tina Ceroni’s story should give Steppan hope. Ceroni, who lives in Toronto, was the second person to be treated by Atkins with a stem-cell transplant. By the time the 36-year-old, a former kinesiologist and triathlete, received treatment, the disease had left her life in ruins. She started having symptoms in 2008 when she was training for a half Ironman triathlon, but thought it was an injury. But the disease progressed.
Eventually, she lost her fitness business, she could no longer drive and she was living with her parents because she could not be alone. Several times a month she was rushed to the hospital by ambulance after something as small as a loud noise or cold air triggered an episode of severe muscle stiffness in her legs, torso, abdomen and elsewhere that could be life threatening.
“It is tremendously difficult,” she said. “Your hope for a positive future is so bleak, the disease starts to chip away at you.”
Since undergoing a stem-cell transplant in 2011, Ceroni’s life has completely turned around. She calls it a miracle.
The former fitness freak has returned to that passion with a new vigour. “Now I feel like the possibilities are endless. I appreciate life so much and everything it has to offer.”
She is once again cycling and competing in triathlons. Next year she hopes to compete in an Iron Man triathlon as part of an effort to raise money for the Ottawa Hospital Foundation to support research and say thank you to Atkins and his team. Last year she presented Atkins with a cheque for $36,762 raised at a gala she organized. This year she hopes to raise more.
“I went to visit Dr. Atkins and meet the team and I was able to thank them. My gratitude for them can’t be expressed in words. What they are doing to change peoples’ lives is extraordinary. I wouldn’t be thriving today without Dr. Atkins and The Ottawa Hospital.”
•••
For Steppan, it has been a long journey from her first diagnosis.
She and her husband and children (they have six between the ages of 29 and 13) lived in Cranbrook, B.C., where her husband was a general contractor working for a company that built resorts, when she received a diagnosis that explained the painful and alarming symptoms she had been experiencing. She was told there was no treatment and no cure.
Steppan says she decided to buy a house in Saskatchewan (she bought it on Kijiji for $32,000) to spend her final years quietly with her family.
While there, she began receiving a treatment that improved the symptoms, but her doctor told her she needed to be in a bigger place where she could get more specialized health care.
They moved to Ottawa, where they had relatives, in hopes of improved treatment for Steppan. The first thing her neurologist told her was: “I know your disease and you will be fine.”
Steppan, her two youngest children and her husband now share an apartment close to The Ottawa Hospital. She can take a bus alone to the hospital; her children are in school; and her husband has a good job as a builder. She said her family would like to return home to British Columbia but it is too soon to say whether her disease, like the first two patients, will go into remission.
Still, she feels stronger every day and, like Ceroni, is having a hard time finding the words to express thanks for the new lease on life she has been given and relief from the disease that she says felt like “giving birth over and over again.”
When she next sees Atkins, she says: “I will cry.”
epayne@ottawacitizen.com
查看原文...
