Brain and spinal cord scars in people with multiple sclerosis (MS) may reveal why they develop progressive disabilities, research suggests.
A new study explores whether inflammation leads to permanent scarring in three diseases. Researchers examined multiple Sclerosis (MS), Aquaporin-4 antibody-positive neuromyelitis optica spectrum disorder (AQP4-NMOSD) and Myelin oligodendrocyte glycoprotein antibody-associated disorder (MOGAD).
They also assessed if the scarring offers a reason for the absence of slow progressive disability in AQP4-NMOSD and MOGAD.
Damage and repair
The body’s immune system targets the myelin, the insulation around the nerves in all three conditions. This causes inflammation and leads to the removal of the myelin within the brain and spinal cord. Areas of demyelination appear as white spots on an MRI.
This could lead to symptoms such as visual problems, numbness, weakness, bowel or bladder dysfunction.
The repair mechanisms within the body try to reinstate the nerves and repair the lesions but this can be incomplete. It could result in a scar that remains visible on MRIs and leaves nerve fibres vulnerable to further damage over time.
Multiple sclerosis study
The researchers revealed that with MS, areas of inflammation reduced only modestly in size which led to a moderately sized scar. If the scar is in a region of the brain and spinal cord that controls arm or leg muscles then nerve fibres can degenerate and cause slow worsening of the disability in the secondary progressive course of MS.
Research and results
Eoin Flanagan, a Mayo Clinic neurologist and senior author of the study said: “The differences in scarring that we found will help physicians distinguish these three diseases more easily to aid in diagnosis.
“More importantly, our findings improve our understanding of the mechanisms of nerve damage in these three diseases and may suggest an important role of such scars in the development of long-term disability in MS.”
AQP4-NMOSD and MOGAD do not share the same slow progression of disability that MS does.
With AQP4-NMOSD, large areas of inflammation occur during attacks causing severe symptoms. Scarring is common but smaller than and in less important locations than MS. This leads to fewer long-term problems.
Researchers found that with MODGAD, despite the large areas of inflammation that occur during an attack, the lesions tend to disappear completely over time.
With MOGAD, despite having large areas of inflammation during an attack, the researchers found lesions tended to disappear completely over time and not leave any scar. This fits well with the excellent recovery from episodes and overall good long-term prognosis without the slow worsening disability seen in MS.
While the reasons for the recovery are not known, it could mean an enhanced ability to put the covering back onto nerves.
Dr Flanagan concluded: “We hope that the improved understanding on the ways MOGAD repairs its lesions so well may lead to novel treatment avenues to prevent scar formation in MS.”
CES in the spotlight at first-of-its-kind event
Healthcare professionals and patients will unite next week at a first-of-its-kind event to help raise awareness of the life-changing impact of Cauda Equina Syndrome (CES).
The inaugural CES Festival and Conference will run from Monday to Friday next week, culminating in International CES Awareness Day on October 1.
The free virtual event will bring together key figures from across the UK to help widen discussion around the topic, which is still so little-known that many people suffer in silence from a lack of diagnosis or appropriate support.
The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis.
Sexual problems are also commonly experienced by people with Cauda Equina, exacerbating the mental and physical effects of the condition, and which can leave people facing life-changing consequences in a number of ways.
Through the CES Festival and Conference, organiser Claire Thornber – founder of the Cauda Equina Champions Charity, the UK’s biggest voice on the condition – has brought together a full spectrum of insight into CES, to enable healthcare professionals and the public alike to gain a better understanding of CES and its impact.
Among those sharing their stories and advice at the event will be Duncan James, part of boyband Blue, who has experienced CES and will discuss body image and exercise as part of recovery.
Leading professionals from the healthcare world will feature, alongside people with personal experience of CES, and attendees will be given an opportunity to revisit a landmark BBC report from 2019 which, for the first time, laid bare the reality of CES on the UK healthcare system.
The programme for each day will be shared with pre-registered attendees on the morning, with the webinar content remaining available on the website from then on, with the intention of continuing to grow the resources available and create a hub of advice and inspiration for people affected by CES.
“We want this to be an opportunity to share best practice, a lot of people are trying really hard to change the situation around CES and the lack of awareness, and mindset is shifting, but there is a lot to do to change the fact it is still too unknown,” says Claire.
“There is no national pathway yet, although some good work is being done in a couple of places, so we are moving closer. Official statistics say there are 1,000 cases of CES each year, but we think it is probably three times that, as it’s still not properly recognised. There are as many cases of CES as there are meningitis each year, but why is there no public health campaign?
“The impact of CES can be life-changing. We are seeing people being discharged after their operation with no support until their three-month follow-up, they’re cast into the community. This can cause relationship problems, sexual problems, problems in returning to work. These things change lives.
“We want the website to be a growing resource for healthcare professionals and patients and to help change the perception of CES.”
To register for the CES Festival and Conference, visit here
Setting global standards in neurorehab
With a global reputation for its work in brain and spinal cord injury rehabilitation, Craig Hospital has delivered life-changing outcomes for thousands of patients for 65 years. Deborah Johnson meets Jandel Allen-Davis, CEO of the pioneering US hospital, to learn more about its work
With an unrelenting focus on rehabilitation, underpinned by world-leading technology and led by a team who pride themselves on being by their patients’ sides every step of the way, Craig Hospital has built a global reputation for its work.
Having offered neurorehabilitation since 1956, supporting over 34,500 brain and spinal cord injury patients during that time, Craig is known the world over for its pioneering and brave programmes which empower patients and maximise their independence.
From its base in Denver, Colorado, Craig attracts patients from across the United States – and often internationally, too – with its ‘Craig graduates’ routinely building a lifelong affection with the hospital and its team, forever indebted to the life-changing impact they have made.
Led by Dr Jandel Allen-Davis, who became CEO of Craig in 2018, Craig’s reputation for pushing the boundaries of possibility for its patients through intensive rehabilitation is one she is committed to taking forward even further.
“We work hard, we’re healing bodies, minds and spirits,” Jandel tells NR Times.
“The people we care for woke up with one reality and went to bed with a very different one – but there is life after brain injury or spinal cord injury, and we will show them that is possible.
“The interesting thing about Craig is that typically in United States acute rehab, you’ll get two or three hours a day (of rehabilitation). Here at Craig, it’s between four and six, and it’s usually six.
“The day generally starts at 9 and ends at 4, and that hard work could be physical for brain injury and spinal cord injury patients, or cognitive for brain injury patients.
“We only have 93 beds, so it’s a precious resource and there is way more demand than we have beds.
“They have got to come here ready to work. On the first day here, we’ll get them fitted for a wheelchair if that’s needed, we start work on day one and work hard from there.”
But the concept of hard work is something welcomed by Craig patients, with the outcomes of countless Craig graduates showing what can be possible for those living with brain and spinal cord injury.
“We achieve stellar outcomes,” says Jandel.
“In 2020, 82 per cent of our patients were discharged to their homes, and about 48 per cent of our SCI and BI patients returned to work or school within one year after discharge.
“Our patients require significantly fewer hours of daily attendant care than those who don’t come here – we strive for independence.
“I love it when I hear patients say ‘I do what I used to do, but now I do it differently’. Often they say they wouldn’t go back to their life before their injury – and often that’s because they have discovered new resilience and determination in themselves they had no idea existed.
“It’s pretty remarkable and shows us every day there is life on the other side of spinal cord injury and brain injury, a good life.”
With therapy programmes devised around the exact needs of each patient, Craig’s use of technology and equipment – partly funded by the “magical generosity” of donors through its associated Craig Foundation – is genuinely world-leading.
Its work in transcutaneous electrical stimulation for spinal cord patients in particular is globally significant, having begun in pilot in 2019, and is now helping people to regain the power of movement.
“We are helping people to get their function and movement back, even years after injury, it is really amazing,” says Jandel.
“But the physician in me totally believes and knows that technology is like a scalpel and pills, they are tools, enablers, not the be all and end all.
“We start with the basics and then look at how technology can advance their rehab. It’s a holistic approach, of which technology is a part.”
But the part technology plays is without doubt a key component in Craig’s offering – from exoskeletons to EyeGaze, VR to robotics, as well as gaming which proves especially popular in its Teen Rehab groups.
And through its work in research and paving the way for new innovation, the potential for its patients – both current and future – is increasing all the time.
“We have the most amazing equipment, there are some really cool things,” says Jandel.
“It starts here at Craig where we have the most highly-skilled therapists who understand neuroscience and body mechanics, we’re learning more about neuroplasticity and the ability to regenerate. We have things being created on 3D printers by our therapists which can support people in living independently.
“Human ingenuity and the quest for innovation will never be complete, and that thirst will never be quenched, thank God.
“Neurorecovery is a big frontier in an exciting way, in the way that brain plasticity can recover, and neuroregeneration through spinal cord injury transplant of tissue – these things are super new, the data is not yet solid, but the cool thing is that as we have a research unit at Craig, we stay in the game all the way.”
But for Jandel, while technology and therapy are of course fundamental in Craig’s offering, the factor that underpins its reputation, outcomes and work is the dedication of its team.
“This place is so unique. I’ve never worked in a place which lives and breathes patient and family-centred care like this. A lot of places talk about it, but this is truly standout – and I can say this with 40-plus years in healthcare,” says Jandel, whose background is in obstetrics and gynaecology, and admits a move into neurorehabilitation was “completely off the beaten path”.
“It’s team-based care. We have psychologists, PT, OT, speech and language and the ‘angels’ who are the clinical care managers.
“I’ll have been at Craig for three years in October and it still feels new. I think that speaks volumes about what a difference it makes to bring your whole self to work, with team mates who bring their whole selves to work. It is a privilege and an honour to serve at Craig.
“From the folks in the environmental services team, through to the frontline caregivers, everyone gives their all. Some of the leadership team have been here for 30-plus years, they are Craig veterans, and everyone plays their role.”
Leading from the front, Jandel is often to be found walking the floors at Craig, getting to know patients and their families and discovering the impact her team’s work is having on their lives.
“I love walking the floors and talking to patients, they gush about this place and the relief that washes over them when they come here,” says Jandel.
“We hear from families what a wonderful place this is, and I say ‘It was like this when I got here’.
“It’s not just about the patient; as with brain injury and spinal cord injury, they are probably going to need an attendant to help them. So we deliver family-centred care.
“The patient and family are at the centre of a myriad of services and people that surround that patient, and we customise a care delivery programme.
“When I’m walking around, I joke to patients ‘Did we beat you up today?’ They say we have and I say ‘Well, our work is done’.
“Craig graduates always come back, many come to get their ‘tune ups’, get their wheelchair checked, and so on. But we offer lifelong care and support for patients and their families, so we do hope they will come back.”
As a hospital working at the forefront of neurorehabilitation, but with only 93 beds, Craig is a great believer in the power of empowering people in their own homes and communities, with the COVID-19 pandemic highlighting the importance of enabling that.
“I’m interested in what potential lies ahead for distanced medicine,” says Jandel.
“With people living longer, we have to think about delivering care for everyone, it’s less about the ages and stages. As an example, spinal cord injury patients do age more quickly, and there are parts that telehealth can enable.
“Home health needs a huge lift, people live in tiny communities – how do they access the support and neurorehabilitation they need? This is where their life happens so it’s more natural for people if they can do this where they live.
“If we can figure out how that works, then do we need to add a whole ton of new beds? We have to think about these sorts of things. The economics of it would enable us to lessen the burden on resources, while enabling people to be more independent.
“Rehab is always going to be part of the deal, so we need to do the right things.”
While Craig’s work continues to develop, with ongoing innovation and progress for its patients made by the day, it will continue to hold its place as one of the world’s leading neurorehab centres.
But for Jandel, the ultimate dream is that no patients would need to access such a place, and that prevention could get to such a stage that such intensive neurorehabilitation would not be needed.
“The big dream is that we wouldn’t need a place like this,” she says.
“Nobody wakes up in a morning and says ‘I want to go to Craig’.
“We’re in a space now where we’re thinking more about prevention, how to prevent sports injuries, workplace injuries. I think it’s so important to use our voice in the prevention space, alongside the work we’re doing now in treating.”
Maggie Goldberg announced as CEO of Reeve Foundation
A new CEO has been announced by the Christopher & Dana Reeve Foundation to help advance its efforts to find a cure for spinal cord injury even further.
Margaret (Maggie) Goldberg becomes President and CEO of the Foundation, having long served on its leadership committee and helping to drive its mission by advancing innovative research and improving the quality of life for individuals and families impacted by paralysis.
In her new role, she will unveil a fresh approach to the Foundation’s research portfolio and establish new collaborative partnerships to bring greater awareness and attention to the needs of the paralysis community.
Maggie becomes only the second female CEO in the Reeve Foundation’s history, with it set to embark on its 40th anniversary year in 2022.
At 16 years old, Maggie broke her C2 vertebrae as a passenger in a car accident. She recovered fully, but her injury set her on a mission-driven career path to work on behalf of the paralysis community.
Working closely with Christopher and Dana Reeve, she helped establish the only national paralysis-focused organisation centreed around a dual mission – Today’s Care. Tomorrow’s Cure®.
“Throughout my career, my mission has been to ensure that people living with paralysis are supported to live empowered and independent lives,” she says.
“As CEO, I will continue to advocate and push to accelerate research toward cures, expand community outreach, and provide resources to elevate the voices and needs of our community and achieve greater representation. Those living with paralysis must have a seat at the table to achieve real equality.”
Maggie has dedicated over 20 years to the Reeve Foundation and its community, holding numerous executive roles at the Foundation during her tenure.
Most recently, she served as Chief Operating Officer, providing the leadership, management, and vision to strategically grow the organisation. Prior to that, she served as Vice President of Policy and Programs, which included overseeing the Foundation’s National Paralysis Resource Center (PRC).
The PRC – funded by an $8.7 million-dollar federal cooperative agreement from the Administration for Community Living, part of the U.S. Department of Health and Human Services – provides comprehensive information, resources and referral services to individuals impacted by paralysis.
Since its opening in 2002, more than 110,000 people have received one-on-one assistance from the PRC, accessing vast resources and free personalised support from its programs. Goldberg has also served as Senior Vice President of Marketing and Communications, a position she held for 13 years.
Among Maggie’s highest priorities in her new role is launching a modern approach to the Foundation’s scientific endeavours – a new platform for funding collaborative research from the bench to the bedside, designed to address key roadblocks along the scientific continuum and accelerate progress toward meaningful therapeutics.
In the past 40 years scientific research begun in earnest to address SCI and today innovative therapies and cures are finally in sight.
“The Reeve Foundation has long focused on uniting the brightest minds in the field to develop and deliver real-world treatments that will move the field closer to cures for spinal cord injury,” says Maggie.
“Now, more than ever, this requires global coordination and collaboration among SCI stakeholders, scientific and medical leadership, regulatory bodies and purposeful investors.
“Also paramount to clinical translation is an ecosystem and funding that supports all aspects of therapeutic development – from clinical trial design to regulatory approval to reimbursement, and more.
“Novel partnerships between advocacy groups and medical innovators can more effectively drive solutions forward to market. Success lies in the creation of collaborative frameworks designed to overcome traditional hurdles and dramatically speed the pace of progress.”
Jay Shepard, board Chair, Reeve Foundation, adds: “Maggie has been a devoted and powerful presence within the Foundation and for the spinal cord injured community, providing hands-on support and partnership for more than 20 years.
“Her expertise, dedication, and passion will be invaluable in her role as CEO as we advance our mission to bring tangible cures and treatments to the community and improve the lives of all those impacted by paralysis.
“There was no one better suited to lead this revered organisation, and I’m excited to continue working alongside her in this new chapter for the Reeve Foundation.”
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