In this blog and in our Fall/Winter newsletter we told the story of Dan Muscat, the St. Thomas, Ontario jeweler who has seen remarkable reductions in the symptoms of his scleroderma — a painful and deadly disease that turns the skin of its victims into cement-like hardness and then petrifies their internal organs.…
In this blog and in our Fall/Winter newsletter we told the story of Dan Muscat, the St. Thomas, Ontario jeweler who has seen remarkable reductions in the symptoms of his scleroderma — a painful and deadly disease that turns the skin of its victims into cement-like hardness and then petrifies their internal organs.
Over the summer, Dan underwent an experimental stem cell therapy at The Ottawa Hospital under the care of Dr. Harry Atkins, who has done outstanding work in treating patients with other autoimmune diseases such as multiple sclerosis, Stiff Person’s Syndrome and Crohn’s disease using a combination chemotherapy/stem cell approach.
Avis Favaro reported on Dan’s “180-degree” turnaround on CTV National News last night, telling Dan’s powerful story. You can watch it here.
After the initial report, the CTV website provides a four-minute interview with Dan that goes into greater detail, along with interviews with Dr. Atkins and James Price, President and CEO of the Canadian Stem Cell Foundation, who says “Dan’s story is an exciting one for the field.”
As Ms Favaro says at the end of her report, Dan continues to get improve and is now able to walk three kilometres on a treadmill. While the extreme treatment isn’t for all scleroderma patients — it comes with potentially fatal risks — it offers new hope where none existed before.
In the wake of the CTV story on Dan, The Ottawa Hospital has produced an online resource for people seeking more information about chemo/stem cell treatments for scleroderma and other autoimmune diseases like MS and Stiff Person’s Syndrome. You can find it here.
In the summer of 2014, Dan Muscat’s fingertips started to tingle. It felt like tiny shards of glass were piercing the skin underneath his fingernails.…
In the summer of 2014, Dan Muscat’s fingertips started to tingle. It felt like tiny shards of glass were piercing the skin underneath his fingernails. Over the next weeks and months the pain crept into his hands.
His family doctor thought it might be arthritis and prescribed a steroid to get things under control. “Within days, the disease sped up,” says Muscat. “It went from the top of my head to my toes. My ankles and my feet were so inflamed I couldn’t walk 20 feet.”
Muscat, who owns a jewelry business in St. Thomas, Ontario, was referred to a rheumatologist who immediately recognized what was happening to him: “Dan had rapidly progressive early onset diffuse scleroderma,” says Dr. Janet Pope of St. Joseph’s Health Care in London.
Scleroderma — from the Greek words for “hard” (sclera) and “skin” (derma) — is the term used for a group of rare autoimmune diseases that, according to the Mayo Clinic, involve hardening of the skin and connective tissues due to an overproduction of collagen. Diffuse scleroderma is a systemic type of the disease, meaning it affects not only the skin and muscle but also the digestive tract and internal organs, ultimately leading to death.
The future did not look good for Muscat: “He had not responded to usual immune suppressive treatment,” says Dr. Pope.
By late 2015, Muscat was growing desperate. He had heard that Dr. Richard Burt at Northwestern University in Chicago was offering a treatment using a patient’s own bone marrow stem cells to rebuild their immune system and shut down scleroderma. Muscat reached out to the Canadian Stem Cell Foundation for guidance.
“I investigated costs of Northwestern University treatment,” says Muscat, “and it was somewhere between $300,000 and $350,000. I thought about selling my business or my home. If I had to, I would have done that. Financially, it would have been a huge burden.”
Because the American treatment is similar to the combination chemotherapy/ bone marrow stem cell transplant treatment that The Ottawa Hospital’s Dr. Harry Atkins has used successfully against extreme forms of multiple sclerosis (MS, which is also an autoimmune disorder), the Foundation suggested Muscat reach out to him. Earlier this year Dr. Atkins agreed to take Muscat on as his first scleroderma patient.
“He fit the profile of the kind of patient best treated with these kinds of stem cell transplants” says Dr. Atkins, who is also an associate professor at the University of Ottawa. “There was a randomized trial carried out in Europe that was very well done and had very good results. I know the doctors involved and we’d talked a little bit about it, but their methods had also been published and are available for everybody. That’s why we publish — to spread the knowledge.”
By the time Muscat arrived in Ottawa in May, the disease had taken its toll. Once an imposing figure who worked out regularly and thought nothing of going for five- or six- miles runs, Muscat had watched 45 pounds fade from his six-foot frame. His brisk walk had turned into a painful shuffle. His boundless energy (he built a log home by himself, is an avid fisherman and collects classic sports cars) disappeared, making it difficult to get through a day. His fingers became like stone claws, curving in at the knuckles. His skin was so impenetrable he worried the Ottawa medical team might not be able to run an intravenous line. And the pain was excruciating.
“On a scale of 1 to 10, about 15,” Muscat says.
Muscat began the therapy in June and spent much of last summer undergoing the treatment designed to destroy the diseased immune system and rebuild it with his own purified stem cells, ideally to produce a new, scleroderma-free one. Though not as harsh as the chemotherapy MS patients undergo, it is not a treatment to be taken lightly. The risk did not dissuade Muscat: “If the treatment didn’t kill me, the disease would.”
He made it through chemo with few noticeable side-effects beyond losing his hair and tolerating a couple of infections. Released from hospital in August, he embraced physiotherapy, doing three to five hours daily to get his flexibility back and rid his body of the collagen buildup.
He is now back in St. Thomas, occasionally working at the store — he has to limit his time in public places because the chemo has left him vulnerable to infections. “My pain is one or two percent compared to what it was before.” His range of motion with his arms and legs is much improved and he can get around on foot again.
He realizes it could take a year before the chemo drugs fade from his system and the full benefits of the treatment kick in. Muscat, grateful for the excellent care provided by The Ottawa Hospital’s bone marrow transplant team, is unswerving in his belief that he can beat this disease. “I feel physically and mentally better. I just don’t feel that I’m being attacked.”
In an email message, rheumatologist Dr. Pope said that while Muscat “has a long road ahead, we expect more recovery with softening of his skin and improved function. His pain is less and he feels that shortly after the transplant a ‘switch’ was turned back to how it should be and he developed a better sense of well-being. I will follow him carefully and I hope for more improvement over the next year or two. He is in physiotherapy and is getting ongoing intravenous drugs for safety as his immune system continues to reconstitute. I am very hopeful that Dan will be even better over time. This is not a cure, but has given Dan a better chance of recovery.”
In Ottawa, Dr. Atkins also urges caution. “It’s going to take months and months to know if this is a real improvement. The changes with scleroderma don’t happen overnight. This is not a curative treatment; it doesn’t make scleroderma go away and never come back. It’s something that helps a population of scleroderma patients: some patients improve, some not. There are patients that progress or relapse again.”
Muscat is positive about the future: “I still have the remnants of the disease, but I can jump in and out of my truck again and I can walk a couple of kilometres with no problems. I feel very optimistic, like I’ve been given a second chance.”
Want to know more about last Thursday’s announcement that two Ottawa doctors have found a way to shut down aggressive MS?…
Want to know more about last Thursday’s announcement that two Ottawa doctors have found a way to shut down aggressive MS?
In case you missed it, Rita Celli, host of CBC’s Ontario Today, dedicated her entire hour-long program on Friday to discussing the report. Published in the Lancet, the paper details how Drs. Harry Atkins and Mark Freedman were able to halt the progression of the disease for the 24 patients in the study. Some patients, like Jennifer Molson, saw their MS symptoms disappear entirely over time. You can access the podcast here.
Ms. Celli features Dr. Freedman who explains how the treatment destroys the patient’s immune system through chemo and then rebuilds a new MS free one using their own previously harvested bone marrow stem cells. He also takes calls from listeners, some of whom tell their stories of life with MS.
The program also features clips of Ms. Molson explaining how the treatment freed her from life in a wheelchair, and Dr. Atkins declaring that “MS can be stopped in its tracks.”
The program provided a comprehensive look at the treatment, which is considered high risk (one patient died) and is only for those MS patients for whom nothing else is working.
A team led by two doctors from The Ottawa Hospital has proved that stem cells, used in combination with chemotherapy can halt the progression of aggressive multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.…
A team led by two doctors from The Ottawa Hospital has proved that stem cells, used in combination with chemotherapy can halt the progression of aggressive multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.
In a paper published today in the prestigious medical journal The Lancet, Drs. Harry Atkins and Mark Freedman show that bone marrow stem cell transplants can eliminate all signs of damaging brain inflammation by rebuilding a patient’s immune system.
MS occurs when a person’s own immune system attacks the myelin protective sheath that covers nerves, causing inflammation and damage that inhibits communication between cells in the nervous system — the brain and spinal column.
The researchers took bone marrow stem cells from patients with aggressive MS and purified them in a laboratory. After the patients underwent extreme chemotherapy, their robust stem cells were returned to rebuild new immune systems.
The clinical trial involved 24 patients and tracked their progression over several years. According to The Ottawa Hospital’s news release, after the treatment:
- Not a single participant experienced a clinical relapse (zero relapses in 179 patient-years), whereas before treatment, the participants experienced an average of 1.2 relapses per year.
- Not a single new active inflammatory lesion could be detected in the brains of any of the participants.
- Not a single participant required MS-specific drugs to control their disease.
- 70% of participants experienced a complete stop in disease progression.
- The average rate of brain shrinkage, typically a measure that correlates with MS progression, returned to levels associated with normal aging.
- 40% of participants experienced some lasting reversal of such symptoms as vision loss, muscle weakness and balance problems.
- Some participants were able to return to work or school, regain the ability to drive, get married and have children.
In Jennifer Molson’s case, the treatment eradicated all traces of the MS that had taken over her life. Prior to taking part in the study, she was receiving 24-hour care at the Rehab Centre at the Ottawa Hospital, “learning to how to live with my disability.” She had quit her job and could only walk with the help of forearm crutches or a walker. Life in a wheelchair was imminent.
Now free of MS symptoms for more than a dozen years, Ms. Molson has resumed a demanding career and a busy schedule. As she described in the book Dreams & Due Diligence: Till and McCulloch’s Stem Cell Discovery and Legacy, “I downhill ski, I drive a standard. I can skate. I can dance … Am I cured? I like to use that word. They (Drs. Atkins and Freedman) don’t like to use that word. They’re calling it a lasting remission. I’m very lucky. I got a second chance at life.”
While his recovery was less dramatic, Vancouver’s Aaron Prentice said his quality of life is much improved: “I am now five years post-transplant,” he wrote in the Foundation’s Cellections newsletter last year. “I have not had a relapse and no longer require a cane. My gait has improved significantly and continues to do so. My arms are symptom free.”
The Ottawa Hospital, the MS Society of Canada and the University of Ottawa have produced a video about the clinical trial that can be seen here: https://www.youtube.com/watch?v=vW86owclZes&feature=youtu.be
Marjorie Bowman, trial coordinator and advanced practice nurse at The Ottawa Hospital, expressed her admiration for the remarkable “courage and dedication” demonstrated by the trial’s participants. “We thank the patients from across Canada who participated in this clinical trial, as well as their family members,” she said.
The treatment, Dr. Atkins explained in Dreams & Due Diligence, is a variation on the bone marrow ablation that leukemia patients undergo.
“MS is an autoimmune disease where the immune system is attacking a patient’s brain. The simple concept behind our treatment is, ‘Let’s just get rid of the old immune system and put back the seeds, let a new one grow and hope that it won’t learn the same lesson.’
“Because stem cells don’t carry over immunologic memory. That’s really what we have tried to do. We had a track record for doing transplants for leukemia and knew how we could damage the immune system to remove it. We just applied the lessons we learned in care of patients with leukemia and applied them to this new setting.”
Not for everyone
However, the therapy is not for all MS patients.
“It is only used in very severe cases because participants face a significant risk of infection and other side-effects, including death,” Dr. Atkins said in the media release. “The risks are similar to those faced by leukemia patients undergoing this kind of treatment.”
Indeed, one participant in this study died of liver failure due to the treatment and another required intensive care for liver complications. The treatment regimen was modified to reduce toxicity, but all participants still developed fevers, which were frequently associated with infections.
People who are interested in this therapy should speak with their own neurologist, who can request a referral to The Ottawa Hospital MS Clinic or another major hospital with experience in this area. The Ottawa Hospital cannot treat people without valid Canadian health coverage.
While The Lancet paper is focused strictly on the MS patients, Dr. Atkins has also seen some success treating patients with other immunological disorders such as Stiff Person’s Syndrome, neuromyelitis optica and Crohn’s disease.
And Dr. Freedman has gone on to co-lead a new chemo-free MS clinical trial using mesenchymal stem cells. “These cells have been shown, at least in early studies in humans, to repair — period,” he explained recently. “But they happen, at the same time, to have an anti-inflammatory effect. So they may be able to accomplish both things together. Without the need of any chemo, there is very little risk to the people taking it.”
A turning point for MS
Yves Savoie, President and CEO, MS Society of Canada, called publication of the paper “a turning point” in MS care. “What started as a bold idea has translated into a treatment option for people living with highly active, relapsing MS.”
The $6.47 million trial was funded by the MS Society of Canada and its affiliated Multiple Sclerosis Scientific Research Foundation. The research was also supported by The Ottawa Hospital Foundation, The Ottawa Hospital Department of Medicine and Canadian Blood Services.
Regular readers of this blog will be familiar with the work that Drs. Mark Freedman and Harry Atkins are doing to fight multiple sclerosis and other autoimmune diseases with stem cells. We have profiled both doctors and featured patients like Jennifer Molson, who had her MS eliminated by the treatment more than a decade ago.
On Friday, the Ottawa Citizen provided a comprehensive update headlined ‘Ottawa doctors behind breakthrough multiple sclerosis study.” The report focuses on Alex Normandin, who was a third-year medical student in Montreal when he became patient No. 19 of 24 in the original trial and underwent his bone marrow stem cell transplant in 2008. Now a practising MD, he told the paper that “Life is great.”
So far, more than 30 MS patients have been treated with stem cell transplants arising from the Ottawa study, which received funding from the Research Foundation of the Multiple Sclerosis Society of Canada.
It is not a treatment to be entered into lightly: the extreme chemotherapy patients go through before their own fortified stem cells are reintroduced to reboot their immune systems can be fatal.
However, in a country with one of the world’s highest rates of MS — between 55,000 to 75,000 Canadians are affected —- such innovative treatments are enormously encouraging.
Dr. Brian Goldman, host of CBC Radio’s weekly medical show White Coat, Black Art, wants to know why health care has fallen off the discussion table in this year’s federal election.…
Dr. Brian Goldman, host of CBC Radio’s weekly medical show White Coat, Black Art, wants to know why health care has fallen off the discussion table in this year’s federal election.
In his blog, he points to the Maclean’s magazine “Federal Issues 2015” rundown of what the federal parties are talking about during the election and notes the following:
“Terrorism made the list. So did defence spending. Jobs, crime, climate. No problem. Heath care? Nada.”
Dr. Goldman, an emergency room physician when he’s not broadcasting his view-from-the-front-lines show on the state of health care, wants to know why party leaders aren’t talking about our struggling health care system and what they might do to fix it.
We agree. Our Foundation has been actively advocating for the Canadian Stem Cell Strategy & Action Plan — a private-sector led plan to deliver up to 10 new curative therapies within 10 years. The Plan aligns the key players — scientists, doctors, industry experts, health charity leaders and philanthropists — to follow through on the promise of stem cells to come up with cures that have baffled medical science for centuries. You can watch a short video of what scientists doing the research hope to do here.
Health — and stem cells’ role in health care — should be a major election issue. Health is always top of mind for all Canadians. In early 2014, Abacus Data reported that health care was the number one issue for Canadian voters — well ahead of taxes and job creation. Just last Christmas, the Toronto Star’s political columnist Susan Delacourt predicted that health care would be one of two sleeper issues of the 2015 election campaign:
“…rather than ask the pundits for their predictions about the ballot-box issue for the 2015 election, maybe we should be asking what was on the minds of people around the holiday dinner table this week (besides seconds or desserts). My bet? Health care and seniors’ issues. If Canadian families are not already grappling with health-care concerns at this immediate moment, many are expecting to be juggling matters related to senior care, especially as the population ages.”
So where did health go as an election issue?
Stuff happened. When the price of a barrel of crude oil drops from $107 US to hovering just above $40, it tends to grab the attention of everyone living in a country with a resource-based economy. Canada has also suffered two deadly acts of terrorism this past year, heightening our fears about security in a troubled world. And now the Mike Duffy trial has replaced the weather as the topic du jour at backyard barbecues.
It’s a shame, because our health is absolutely paramount to everything in life. It is a rare Canadian family without someone — an elderly parent, a partner, a child, a niece or nephew — who is struggling with a debilitating, chronic health condition.
Stem cells were discovered in Canada and Canadian researchers are on the verge of delivering stem cell cures for devastating conditions like diabetes, heart disease, cancer, MS & Parkinson’s. We need the Action Plan to make it happen right here, right now. Beyond saving lives, it would also ease the strain on health care — and boost the economy.
We are calling on the Government of Canada and all political parties to commit to contributing just one-third of the investments, about $50 million annually over 10 years. You can find out everything about the Action Plan here. Then you can call on your local federal politician to support the Action Plan.
Because this is not just a political issue. It’s more than an election issue.
It’s a life and death reality that touches us all.
When it comes to treating multiple sclerosis (MS), Dr. Mark Freedman would like to move beyond damage control.
“We can limit, to some extent and in some cases completely, the damage,” says Dr.…
When it comes to treating multiple sclerosis (MS), Dr. Mark Freedman would like to move beyond damage control.
“We can limit, to some extent and in some cases completely, the damage,” says Dr. Freedman, a clinician/researcher at the Ottawa Hospital Research Institute. “But fixing the damage that’s been done? Not yet. “
Fixing the damage done by MS is the ultimate goal of a new $4.2-million clinical trial that Dr. Freedman is co-leading with Dr. James J. Marriott of the University of Manitoba in Winnipeg. It’s called MESCAMS (for MEsenchymal Stem cell therapy for CAnadian MS patients).
“The excitement surrounding the MESCAMS has been tremendous,” says Yves Savoie, President and CEO, MS Society of Canada, a major supporter of the clinical trial. “Not only is Canada fortunate to have two trial sites in both Ottawa and Winnipeg – accepting a total of 40 Canadian participants – but MESCAMS is also part of a larger international research effort studying mesenchymal stem cells that pools scientific resources and expertise from nine countries. This level of collaboration will yield important answers about the efficacy of cell-based treatments.”
Found mostly in the bone marrow, fatty tissue and cartilage, mesenchymal stem cells have a natural anti-inflammatory effect that makes them an intriguing possibility for treating MS, which occurs when a person’s immune system attacks and inflames the protective sheath (myelin) covering nerves. Myelin damage snags the signals that flow from the brain through the nervous system to the rest of the body.
“These cells possibly will act like anti-inflammatory drugs to control the disease,” says Dr. Freedman. ”But what we’re really looking for is the potential for something to heal up, for a sign that these cells are doing something. Other people have noted it in the optic nerve system, which is actually an extension of the brain and is affected by MS.”
Readers may be familiar with the story of Jennifer Molson, the Ottawa woman whose MS symptoms were eradicated by a stem cell bone marrow transplant conducted by Dr. Freedman and Dr. Harry Atkins as part of an earlier clinical trial. Each trial participant underwent a harrowing course of chemotherapy that virtually destroyed their immune system before being given a fortified version of their own bone marrow stem cells to rebuild it. With MESCAMS no such chemo bombardment is necessary.
“We don’t exactly know why Jennifer, and others in the trial, recovered. We think the reason is we were able to curb the inflammatory response to the point where the body could heal. These cells that we’re using (mesenchymal stem cells) have been shown, at least in early studies in humans, to repair — period. But they happen, at the same time, to have an anti-inflammatory effect. So they may be able to accomplish both things together. And without the need of any chemo, there is very little risk to the people taking it.”
The real challenge, says Dr. Freedman, will be measuring — and scientifically documenting — repair, if it happens. “When was the last time you heard something that could repair things in MS? Nobody’s been able to show it. So we’re hoping we will be able to see it and measure it. That’s the real goal of this study. If we can all show the same signal through nine or 10 sites around the world doing this, then we’re going to have the evidence we need to move to the next stage, which is doing this en masse with people who have already acquired damage . That’s what our MS patients are all hoping for.“
However, Dr. Freedman urges caution. This is an early stage clinical trial. If the mesenchymal stem cells do affect repair, it may be minimal. “The primary outcome is going to be the effect on gadolinium-enhanced lesions in MS as shown by MRI. It will prove whether we have biologically viable cells capable of creating an effect that can be measured in humans. It may sound trivial, but it’s never been done.”
Editor’s Note: MESCAMS organizers have published a Frequently Asked Questions page about the trial here (http://bit.ly/1ES3jN1). Full eligibility criteria are available here(https://clinicaltrials.gov/show/NCT02239393).
Two days after we blogged about the scientific concerns regarding Gordie Howe’s experimental stem cell treatment in Tijuana, another example of Canadians seeking unproven therapies abroad has hit the media.…
Two days after we blogged about the scientific concerns regarding Gordie Howe’s experimental stem cell treatment in Tijuana, another example of Canadians seeking unproven therapies abroad has hit the media.
Alberta businessman Lee Chuckry told CBC News in Manitoba that he spent $34,000 for a stem cell therapy in India only to find his MS got worse and that “I think it’s just a big fraudulent scam.”
Chuckry, who has been battling MS for over a decade, was recruited into the stem cell trial by Doug Broeska, founder of a Winnipeg-based company called Regenetek Research. Broeska recruited patients for the the so-called “liberation” therapy pioneered by Italian researcher Dr. Paolo Zamboni in 2008. The treatment, dubbed chronic cerebrospinal venous insufficiency, or CCSVI, involves widening the patient’s neck veins to improve blood flow. The Indian clinical trial combines CCSVI and the injection of stem cells into the veins and spinal column.
In March 2013, Chuckry flew to India for the trial. “It comes to a point of sort of desperation of trying to find the next thing that might help me, so I’m always on the search for that and I came across this,” he told the CBC. But the attacks came back upon his return home. His attempts to get in touch with Broeska about his new MS symptoms were unsuccessful and he received none of the follow-up common in clinical trials, such as MRIs and physical examinations.
According to the CBC, Broeska claimed on his LinkedIn profile that he earned a PhD at the University of Manitoba, but the university could not confirm that and his LinkedIn profile was down yesterday. The International Cellular Medicine Society, of which Broeska claims to be a member, has no record of his membership. And the ethics committee at India’s Inamdar Hospital in India, where the clinical trial is underway, ordered Broeska to step down as principal investigator because his lack of credentials and follow-up “violated international ethical standards.”
In addition, the Winnipeg Free Press reported this morning that the University of Winnipeg has cancelled a joint project with Regenetek Research.
Over the last few years the much publicized potential of stem cells to treat a variety of diseases has raised hope among patients suffering from conditions for which there currently are no cures. This, in turn, has led some less than scrupulous companies across the globe to capitalize on that hope by marketing costly stem cell therapies that do not have the support of proven clinical evidence. For more information, please visit our Treatment Abroad page.
Both the Howe report and this week’s MS controversy point to the need for Canada to make stem cell research and development a national priority. As James Price, Foundation President and CEO, told the Ottawa Citizen earlier this week, “stem cell tourism should be a wake-up call that Canada needs to prioritize funding for stem cell therapies.” He says it illustrates the need for the Stem Cell Strategy & Action Plan, with its goal of delivering five to 10 new treatments to clinics within 10 years. He told the paper that the Action Plan will give Canadians confidence “that new therapies are a priority and ultimately, Canadians will have first access to these therapies.”
Indeed, Canada is a world leader in stem cell research. MS survivor Jennifer Molson has been symptom-free for 12 years after receiving a stem cell transplant in a clinical trial run by Dr. Harry Atkins at the Ottawa Hospital. “I’m living proof of the tremendous potential that exists with stem cell research. I got a second chance at life.” said Molson in declaring her support for the Strategy.
Dr. Harry Atkins’ success in treating a rare disease that can turn active, healthy people into living statues is getting the national attention it deserves this week, thanks to the Journal of the American Medical Association’s publication of his paper, Autologous Stem Cell Transplantation for Stiff Person Syndrome.…
Dr. Harry Atkins’ success in treating a rare disease that can turn active, healthy people into living statues is getting the national attention it deserves this week, thanks to the Journal of the American Medical Association’s publication of his paper, Autologous Stem Cell Transplantation for Stiff Person Syndrome.
The JAMA Neurology paper describes two Canadian women who have had all symptoms of their Stiff Person Syndrome (SPF) disappear thanks to a stem cell treatment that Dr. Atkins and his team at the Ottawa Hospital have developed. Readers of this blog will be familiar with one of the women’s stories — we told you all about Tina Ceroni back in December After our post, Canada AM featured Tina and Dr. Atkins.
This week’s reports, including Elizabeth Payne’s excellent news feature (the “living statue” description is hers) that appeared in the Ottawa Citizen and the National Post, explain how SPS, which strikes about one in a million people, triggers episodes in which muscles seize up uncontrollably, leaving a person rigid. Sheryl Ubelacker of the Canadian Press describes it this way in the Toronto Star:
“SPS is characterized by episodes of stiffness in the muscles and painful muscle spasms, which can be brought on by stress, loud noises or emotional distress. Some people with the disorder are so disabled they are unable to walk or move and may isolate themselves at home to avoid triggering an attack.”
Ms Payne’s story also tells of a third woman, a 53-year-old mother of six named Ingrid Steppan who was told she would likely die from her SPS. A recent transplant patient, she has now “put her wheelchair and walker away.”
Success with MS, Crohn’s and other autoimmune conditions
Dr. Atkins has used this technique with other autoimmune diseases, including Multiple Sclerosis (where he led a multi-year clinical trial involving about 30 patients) Crohn’s disease and neuromyelitis optica. The process involves extracting a patient’s bone marrow stem cells, then purifying and fortifying them. After the patient undergoes extreme chemotherapy, in which their immune system is effectively destroyed, the purified and fortified stem cells are put back to build a new disease-free immune system.
A modest and soft-spoken man, Dr. Atkins does not used the word “cured” when he talks about the patients who have had success with this treatment. He refers to his patients as “in remission.” For Jennifer Molson, an MS patient, that remission has lasted more than a decade. And in the case of Jelissa Morgan, the treatment has allowed her to overcome her crippling neuromyelitis optica and will be resuming her nursing career in September.
The success that Dr. Atkins is having is encouraging and offers great hope for the future. But it also harkens back to the past: the procedure he is refining can be traced back to the groundbreaking work the Canadians Jim Till and Ernest McCulloch did in proving the existence of stem cells in the early 1960s. It’s an area of medical science where Canada researchers excel. And people like Tina Ceroni, Jennfer Molson, Jelissa Morgan … and now Ingrid Steppan are living proof.
We recently featured the story of Tina Ceroni, a Burlington Ontario athlete whose life was sidelined by a rare, insidious disorder called Stiff Person Syndrome.…
We recently featured the story of Tina Ceroni, a Burlington Ontario athlete whose life was sidelined by a rare, insidious disorder called Stiff Person Syndrome. Thanks to a stem cell transplant, Tina’s fitness career — and her life — is back on track. To show her gratitude, Tina raised almost $37,000 for the Ottawa Hospital’s Stem Cell and Bone Marrow Transplant Program. When she was presented the cheque to Dr. Harry Atkins on Dec. 4th, Tina met with two other young women whose lives have been rescued by stem cell treatments: Jelissa Morgan and Jennifer Molson. Today we share Jelissa’s story.
From nurse to patient and (soon) back again
When Jelissa Morgan’s neuromyelitis optica flared up again in early 2012, she was devastated.
The rare immunological disorder, similar to Multiple Sclerosis, inflames the optic nerve and the spinal cord. Jelissa was losing her vision — she couldn’t read or watch movies and had trouble identifying who was talking to her. Walking was difficult. She had serious bladder and bowel problems and her skin itched. ‘My body was in pain,” she says, “but didn’t know how to express it.”
That flare-up, the worst of a series the young woman had experienced since finishing high school, transformed Jelissa from hospital nurse to hospital patient.
Until then, her doctors had kept the condition under control with Prednisone, a synthetic corticosteroid that comes with a slew of potential side-effects such as weight gain, sleep difficulties and mood swings. Some patients develop a humped back and a moon face. Jelissa had all of those symptoms and more.
A switch to a different drug, called Imuran, proved futile: she was on it when the worst flare-up struck.
“They were running out of medication options. My neurologist said, ‘What do you think about a stem cell bone marrow transplant?’ She knew about Dr. Harry Atkins and the work he was doing with MS patients.”
For the past several years, the Ottawa Hospital’s Dr. Atkins, working with neurologist Dr. Mark Freedman, has been treating MS patients with stem cell bone marrow transplants. In essence, he takes stem cells from patients with the most severe cases of the immunological disease and purifies and fortifies them. The patient then undergoes an extreme course of chemotherapy treatments that virtually annihilates their diseased immune system. The robust stem cells are then returned to them to rebuild a new — hopefully disease-free — immune system.
The process has worked well with about 30 MS patients whose disease progression has been stopped. In some cases, symptoms of the disease have diminished significantly and — in at least one case — disappeared entirely.
Dr. Atkins is also using the procedure for people who have other autoimmune disorders such as Crohn’s disease, Stiff Person Syndrome — and neuromyelitis optica.
Jelissa decided to have the experimental stem cell treatment.
“It’s kind of one of those decisions where you don’t want to wait,” she say. “You don’t know when the next flare-up will be. That last flare-up was so bad. Luckily, I was able to regain a lot of the functions I’d lost. But it’s like rolling the dice. You don’t know what could happen with the next flare-up.”
Jelissa received her stem cell transplant in the fall of 2012. She has been free of neuromyelitis optica symptoms ever since.
“I feel better than I did even before the disease began. I have much more energy. I’m off all my pills for the immune disorder and the transplant meds. I’m looking forward to getting my life back on track. That includes buying a car, moving out of my parent’s house and traveling.”
She is excited about returning to nursing in the next few months, after receiving a series of vaccinations to replace the ones lost during the chemotherapy treatment.
“From a patient perspective, a transplant is a hard thing to go through. But I survived. I feel like it’s given me a second chance at life. ”
She strongly supports stem cell research to help more people with diseases like hers.
“Stem cell research opens up so many possibilities. It’s like opening a door and entering a room and you don’t even know what’s in the room yet. It could mean treatments for so many things. There is so much hope there.”