Ethnic groups, geographical regions and MS
It's a disease that strikes down adults at their prime -- and it's found Ground Zero in Canada.
Multiple sclerosis afflicts Canadians at a rate that far outpaces any place else in the world, a new survey has found.
"It's really shocking … It is almost like a Canadian disease," said Karen Lee, of the Multiple Sclerosis Society of Canada.
Nearly 100,000 Canadians have the disease, a rate that's 28% higher than the country with the second-highest mark, Denmark, and nine times higher than the global average, according to the survey by the Multiple Sclerosis International Federation.
While Canadians are the most likely in the world to get the disease, they're waiting longer than most to get diagnosed, and no wonder -- Canada lags behind most developed countries when it comes to the number of neurologists and MRI machines.
There's no doubt speedy diagnosis and treatment play a big role in how many patients fare, said Lee, a neuroscientist who tracks research so the society can choose how to allocate the money it raises -- $12 million in 2013.
"The earlier the treatment, the better the prognosis, generally," she said.
In people with MS, their immune system attacks the sheath that insulates the body's central nervous system, causing damage that can leave victims unable to walk and suffering from physical and cognitive deficits.
Most MS sufferers can be treated with a range of medications that suppress the immune system, but doctors often have to try several to find which one works best for a patient.
When doctors quickly diagnose the disease and find the best treatment, patients fare better, experts say.
Just why Canadians are so afflicted has been the subject of debate and research has uncovered several theories. Among them: Canadians live so far from the equator, the sun is too low in the sky much of the year to cause our skin to make vitamin D; we may have earlier exposure to viruses that might play a role in triggering MS; Canadians may share a genetic predisposition to the disease; those who smoke appear at higher risk.
"We don't have an answer," said Dr. Christine Wolford, a professor of epidemiology and biostatistics at McGill University. She studied the prevalence of MS in the Americas in a study published last year in the journal Neuroepidemiology.
The search for answers has become more challenging because many factors are at play, both genetic and environmental, she said.
The Multiple Sclerosis International Federation first published a survey of MS rates in 2008 and Canada topped the list. Since then, the rate here has jumped another 18%.
Canadians shouldn't put too much stock in those exact numbers, since both here and across the globe, no one has done an adequate job precisely tracking MS, Wolford said.
But there's no doubt Canadians are more afflicted than others.
"Canada keeps coming up on top," she said.
THE MS TOP 10
(Disease prevalence per 100,000 population)
Czech Rep.: 160
-- Source: Multiple Sclerosis International Federation, World Health Organization
Source: THE TORONTO SUN COPYRIGHT © 2014 THE TORONTO SUN (02/01/14)
Multiple sclerosis is most often found in northern Europe, north America, Australia and New Zealand, all populated by European colonists.
In Britain, the numbers affected are highest in Scotland, far higher than they are in England or Wales, while the further north one goes in Scotland the more the figures rise: 229 per 100,000 in Aberdeen, 295 in Shetland, but 402 in Orkney.
“It has been suggested that the origins can be traced back to the Vikings who colonised those parts of northern Europe where MS is most pronounced and that ‘Viking genes’ can make people particularly susceptible to multiple sclerosis,” says the MS Society in Britain.
Today, however, the society is investigating another population group: the black Caribbeans who came to Britain after the second World War and their descendants, some of whom are displaying particular troubles coping with the often-crippling condition.
The disease progressed more quickly among a group of black Caribbeans compared with a white British group. Equally, the former group was also “more likely to experience higher levels of cognitive problems”, say researchers from King’s College and King’s College Hospital in London.
Multiple sclerosis is a neurological condition that affects the central nervous system. Globally, the numbers of sufferers is put at 2.5 million. In the UK, 100,000 people are affected, living with problems with balance and mobility, sight, along with fatigue.
“In interviews, black Caribbean people also more commonly spoke of being less able to deal with feelings of unresolved loss and confusion as a result of their rapidly advancing symptoms,” the researchers say.
Memory problems are mentioned again and again. “I always used to have a very good memory, now my memory’s very, very poor. Long-term memory’s fine, but my short- term memory is really, really bad,” said one 36-year-old man.
“I could have a talk with a friend today and arrange something for tomorrow and if I haven’t written it down, it will go straight out of my head.”
For now, possible explanations are few. “The reasons for the differences were not explored in this study, but could possibly include later perceptions of symptom onset, a genetic predisposition to more severe disease or less exposure to vitamin D,” says the research.
However, it has been known for decades that first-generation black Caribbeans – the so- called “Windies” – faced a relatively low risk from MS, while their children did “not seem to have a higher risk” than those who migrated as adults.
The findings though began to change in the late 1990s. Then, a study reported that living for 20 years in Britain raised the risk, which was “broadly consistent” with a belief that environment plays a key role.
The possible reasons to explain the numbers include lower socioeconomic status, a genetic predisposition to get a worse version of MS, should it come, and evidence that some black Caribbeans with MS are diagnosed later than other sections of the population.
Then there is vitamin D, with a belief that black Caribbeans suffer more than others from the shortage of sunlight in northern climes such as Britain between November and April – even though supplements can fill some of the gaps.
If the problems are clear, the solutions are not yet evident.
“Our findings demonstrated more aggressive MS disease among black Caribbeans despite a number of them being in receipt of disease-modifying therapy,” the team says in a study that was funded by the MS Society.
“More rapid disease progression leads to marked difficulties with ambulation, physical function and distress as a result of multiple losses.” The rising figures for black Caribbean MS sufferers poses issues about culturally sensitive care for the National Health Service, just as in the same way rising dementia rates do so among the elderly Irish community in Britain.
However, a distrustful attitude from minorities in general, not just black Caribbeans, to ethnic-based research can delay the discovery of problems. And some research can be skewed from the off because it is based upon “racially-based stereotypes”.
Last year, a study published by the British Medical Journal noted the cultural differences that exist between some, but not all, white British and black Caribbeans, with the latter more inclined to blame “fate or destiny” for their illness.
Urging officialdom to remember to “be mindful” of cultural differences, researchers call for appropriate investment in multi-ethnic services.If anything, the drift in Britain is away from that, not towards it.
Source: The Irish Times © 2013 THE IRISH TIMES (08/11/13)
Research group raises funds for MS study(31/10/13)
A new group based in the Northern Isles, where the highest prevalence of multiple sclerosis in the world is found, is to raise money to fund research into the disease.
The Shetland and Orkney Multiple Sclerosis Research Project recently acquired charity status as a fund raising organisation.
The money raised by the group will help fund a PhD student at Edinburgh University, who will undertake further research into possible causes of MS.
The data to be used was obtained during genetic studies in the Northern Isles, set up to investigate how important inherited factors might be in causing MS.
The money raised in the two communities will be match-funded by the Centre for Population Studies at Edinburgh University and the project will be led by Dr Jim Wilson, a well-known Orcadian geneticist.
Source: HeraldScotland © Copyright 2013 Herald & Times Group (31/10/13)
Blacks with MS at more visual risk(04/10/13)
Retinal damage and visual impairment appear to impact African Americans diagnosed with multiple sclerosis more than Caucasian Americans, researchers reported here.
In black MS patients who have a history of optical neuritis there was a significant loss of 4.9 letters -- nearly a line of visual acuity -- when compared with white patients [95% CI minus 8.8-minus 1.0; (P=0.016)], reported Dorian Kimbrough, MD, a post-doctoral fellow in neuroimmunology at Johns Hopkins University.
"Vision represents yet another domain of multiple sclerosis manifestations in which disease activity seems more ominous for African Americans," Kimbrough told MedPage Today at his oral Young Investigator's presentation at the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis.
"There are several domains in multiple sclerosis that appear to be worse in African Americans," he said. "To my knowledge, this is the first study that quantitatively shows that vision and retinal structures are another domain that is worse in African Americans. We don't know the reasons for that yet. We don't know if it has to do with genetic factors or environmental factors."
The research team enrolled 830 individuals into the study, including 137 healthy controls and 693 patients diagnosed with MS at three sites, Johns Hopkins, the University of Pennsylvania in Philadelphia, and the University of Texas Southwestern in Dallas. Patients were recruited and observed from September 2008 through December 2012 and underwent serial optical coherence tomography scans and visual acuity testing during a 4-year period.
Patients self-identified as either African American or Caucasian American, and had relapsing remitting multiple sclerosis or secondary progressive multiple sclerosis. The study excluded individuals with diabetes, glaucoma, uncontrolled hypertension, major refractive errors, or other known eye disorders, Kimbrough said.
The control patients included 106 Caucasian Americans and 31 African Americans. The baseline age for the Caucasians was 32.5; the baseline age for the African Americans was 21.4 years. About 60% of the total cohort was women. The Caucasian controls were followed for about 2 years; the African Americans for 1.3 years.
"There were no clinically significant differences in visual acuity of healthy controls by race at any contrast level," Kimbrough observed. They were tested at contrast levels of 100%, 2.5% and 1%. The results were adjusted for age and sex.
About 88% of the MS patients were Caucasians; more than 75% were women; more than 90% had the relapsing/remitting form of multiple sclerosis. Median follow-up was 2 years.
In healthy African Americans retinal thickness was measured at 5.06 microns thicker than in healthy Caucasians (P=0.025). But in MS patients, retinal thickness was 1.53 microns thinner in African Americans (P=0.367), a non-significant difference.
The manifestations of MS in African Americans is more severe than in Caucasian Americans, Kimbrough said. "African Americans tend to have higher Expanded Disability Status Scale scores and higher multiple sclerosis severity scores at diagnosis," he said. "Markers of intrathecal immunoglobulin synthesis are seen more frequently and at higher levels than in Caucasians. Greater T1 and T2 lesion volumes are seen on MRI."
"I think [visual and retinal damage] is one of several things that doctors should be on the lookout for in African American patients," he said, including overall disability and difficulty in walking. "With this study we have added vision to the list. I think physicians should have more vigilance with African American patients with multiple sclerosis."
Margaret Burnett, MD, clinical professor of neurology and neuropathology at the University of Southern California in Los Angeles, told MedPage Today that "this information is compelling enough for doctors to look for these visual manifestations in African Americans with multiple sclerosis. They definitely should be looking for these symptoms."
Kimbrough disclosed commercial interests with Medical Logix and Teva. Co-authors disclosed commercial interests with Teva, Novartis, Bayer, Biogen Idec, Roche, Acorda, Mylan, Abbott, Genzyme, Prana, Applied Clinical Intelligence, Vertex, Medimmune, and Prothena.
Burnett had no disclosures.
Primary source: European Committee for Treatment and Research in Multiple Sclerosis
Source reference: Kimbrough D, et al"Accelerated retinal damage and vision impairment in African-American multiple sclerosis patients" ECTRIMS 2013; Abstract 60.
Source: MedPage Today © 2013 MedPage Today, LLC (04/10/13)
The number of people living with multiple sclerosis around the world has increased by 10 percent in the past five years to 2.3 million, according to the most extensive survey of the disease to date.
The debilitating neurological condition, which affects twice as many women as men, is found in every region of the world, although prevalence rates vary widely.
Multiple sclerosis (MS) is most common in North America and Europe, at 140 and 108 cases per 100,000 respectively, while in sub-Saharan Africa the rate is just 2.1 per 100,000, the Multiple Sclerosis International Federation's Atlas of MS 2013 showed on Wednesday.
The atlas also confirmed that MS occurs significantly more in countries at high latitude, with Sweden having the highest rate in Europe and Argentina having more cases than countries further north in Latin America.
The reason for the link to high latitudes is unclear but some scientists have suggested that exposure to sunlight may reduce the incidence of the disease.
The survey found a big increases in the number of medical experts trained to diagnose MS and help patients with treatment, while the number of magnetic resonance imaging (MRI) machines available to carry out scans has doubled in emerging countries.
But huge disparities remain when it comes to access to modern disease-modifying drugs.
MS medicine has seen a number of advances in recent years, particularly with the introduction of a new generation of oral therapies such as Novartis' Gilenya, Biogen Idec's Tecfidera and Sanofi's Aubagio.
These medicines offer an effective alternative to older disease-modifying treatments that are given by injection.
The survey found that injectable drugs like Biogen's Avonex and Teva's Copaxone were partly or fully funded in 96 percent of high-income countries, while Gilenya was available in 76 percent.
However, none of these drugs was available under government programmes in low-income countries.
Source: Thomson Reuters Copywrite 2013 Thomson Reuters (02/10/13)
Impact of disease-modifying therapies on the survival of patients with MS in Taiwan, 1997-2008(05/08/13)
BACKGROUND: Little is known about the impact of disease-modifying therapies (DMTs) on the survival of patients with multiple sclerosis (MS) throughout the world.
OBJECTIVE: We conducted this study to investigate the association between DMTs and the survival of patients with MS in Taiwan.
METHODS: A total of 1,240 individuals who had a primary diagnosis of MS and a seriously disabling disease certificate in Taiwan between 1 January 1997 and 1 December 2008 were followed up until 31 December 2009 to check what medical services were provided to them and whether they had a date of death recorded in the national mortality database. Disease-modifying therapies, including interferon beta 1-a, interferon beta 1-b and glatiramer acetate, were included in the analysis. Follow-up information was available on all individuals; the mean follow-up time was 54.3 months (standard deviation [SD] 38.8 months). A Cox regression model was utilized to reveal the effect of DMTs on MS mortality by controlling for sex, age, residence, insurance amount and geographic region.
RESULTS: Eighty-eight of the 1,240 individuals (7.1 %) died. The risk of mortality in the first year showed a 7-fold age- and sex-standardized mortality rate increase over that of the general population in Taiwan. In the fully adjusted model, the final independent risk factors were older age, rural residence, lower economic status and lower adherence to DMTs.
CONCLUSION: The results of this study support the notion that DMTs can improve the survival of patients with MS, and show that individuals with the risk factors of older age, rural residence and lower economic status had a higher MS-related mortality risk in Taiwan.
Tsai CP, Lee CT.
Neurology, Neurological Institute, Taipei Veterans General Hospital and National Yang-Ming University, Taipei, Taiwan, ROC
Source: Clin Drug Investig. 2013 Jul 17 & Pubmed PMID: 23861171 (05/08/13)
Multiple sclerosis, a disabling disease which strikes mostly young people, is fast becoming a cause for worry in India, doctors at the All India Institute of Medical Sciences (AIIMS) said.
AIIMS has carried out a study on the patients of multiple sclerosis it treats. It found that around 70-80 percent of patients were in the age group of 18-35 years. They all had relapsing remitting multiple sclerosis, the most common of the four types of the disease.
“The onset of multiple sclerosis is typically around young adulthood although it is also observed in paediatric population,” Rohit Bhatia, additional professor of Neurology, AIIMS, said at a press conference here.
He added that the major problem in India was the high cost of drugs and the fact that oral drugs were not available. Most of the drugs are the injectable types and cost anywhere between Rs.15,000 and Rs.50,000.
He said the neurology department at AIIMS was seeing more referrals with suspected multiple sclerosis than previous years.
Kameshwar Prasad, professor at the department of neurology at AIIMS, said: “There are no concrete reasons for the cause of the disease and it is not on the government’s priority as in India the disease burden is less as compared to western countries.”
Madhuri Behari, head of the department of neurology, stressed on the need for proper counselling for people diagnosed with the disease and that most of them slip into depression when they discover that they have multiple sclerosis.
Doctors said that patients will benefit from the two new oral drugs approved internationally for multiple sclerosis treatment which are likely to be available by 2014.
The number of multiple sclerosis patients has increased in India in recent years. It is estimated that there are between 100,000-2,00,000 MS patients in India.
Multiple sclerosis affects the ability of nerve cells in the brain and spinal cord to communicate with each other effectively leading to disabilities like vision loss and other organ paralysis.
Source: FirstPost Copyright © 2013 Firstpost (28/05/13)
Multiple sclerosis (MS) is more common in black women than in white women, according a new study.
The research was conducted by Kaiser Permanente and was published in the journal Neurology. The results contradict the widely believed notion that black people are less vulnerable to the disease.
The electronic health records of over 3.5 million members of Kaiser Permanente Southern California were analyzed from the beginning of 2008 to the end 2011. A total of 496 patients newly diagnosed with MS were identified.
Of these new cases, black patients had a 47% greater likelihood of MS compared to white patients. Results also showed that Hispanics had a 50% reduced risk compared to white patients, and Asians had a 80% lower chance than whites.
Seventy percent of MS cases occurred among females, the researchers said. However, "this preponderance of females diagnosed was more pronounced among black patients than white patients."
Black females had an increased prevalence of multiple sclerosis compared to both white males and females, the authors pointed out. Black men, on the other hand, had a comparable probability of MS riskto white men.
Additionally, the reduced risk among Hispanic and Asian patients was true for both males and females.
Leading author Annette Langer-Gould, MD, PhD, of the Kaiser Permanente Southern California Department of Research & Evaluation, said:
"Our findings do not support the widely held belief that blacks have a lower risk of MS than whites, but that MS risk is determined by complex interactions between race, ethnicity, sex, environmental factors and genotypes.
Although additional research is needed, possible explanations for the higher incidence of MS in black women include a greater prevalence of hormonal, genetic, or environmental risk factors such as smoking, compared to patients from other racial or ethnic groups."
Approximately 19,000 Americans are diagnosed with MS each year, or 250 each week, according to the report. The mean age of MS diagnosis among the subjects was 41.6 years, however, onset can occur between 8.6 and 78.3 years.
Although the average time from the start of symptoms to MS diagnosis was 4 months, it could be as long as 40 years, the authors explained.
Overall, Hispanic and Asian patients were younger at the time of their diagnosis than whites and African-Americans.
Worldwide prevalence reports as well as a single study of Korean War veterans in the 1950s, which showed that white males had a two times higher chance of receiving disability compensation for MS than blacks, are responsible for the idea that MS is not common in black people.
Dr. Langer-Gould concluded:
"A possible explanation for our findings is that people with darker skin tones have lower vitamin D levels and therefore an increased risk of MS. However, this does not explain why Hispanics and Asians have a lower risk of MS than whites, or why only black women but not black men are at a higher risk of MS.
Our findings indicate that including persons from different racial and ethnic groups in future studies of MS susceptibility and prognosis will likely reveal important insights into the causes of this often debilitating disease."
Source: Medical News Today © MediLexicon International Ltd 2004-2013 (07/05/13)
Studies show that while whites are twice as likely as Blacks to suffer from multiple sclerosis (MS), blacks suffer from more MS risks, and a larger variety of more dangerous symptoms.
Neurology researchers has found that, in Blacks, the disease progresses more rapidly – and that they don’t respond as well to therapies.
Magnetic resonance images (MRI) of a cohort of 567 consecutive multiple sclerosis patients showed that blacks with multiple sclerosis had more damage to brain tissue and had less normal white and grey matter compared to whites with the disease.
“Black patients showed more brain tissue damage and accumulated brain lesions faster than whites, along with rapid clinical deterioration,” confirms first author on the study Bianca Weinstock-Guttman. “The results provide further support that black patients experience a more severe disease, calling for individualised therapeutic interventions for this group of multiple sclerosis patients.”
Since the median time to both MS diagnosis and MS onset to treatment was significantly shorter for blacks compared with the whites, it is likely that the increased risk of disability for blacks is independent of health care access.
It has also been noted that Blacks with MS were more likely to present with multifocal signs and symptoms, were more likely to have clinical involvement restricted to the optic nerves and spinal cord (opticospinal MS), and were more likely to develop transverse myelitis compared with white Americans with MS.
More Details About Racial Differences in Multiple Sclerosis
Time to Diagnosis: The groups differed in how long it took to get diagnosed after they started experiencing MS symptoms. Blacks were diagnosed about a year after symptom onset, while the white participants were diagnosed two years after their symptoms started. One theory is that the black patients were experiencing more severe symptoms, which led to a quicker diagnosis.
First Symptoms: Black patients tended to have more diverse symptoms at disease onset, caused by multiple lesions in different places in the central nervous system, than the white group did. However, about 18% of blacks had symptoms restricted to the optic nerves and spinal cord, while only 8% of the white participants had lesions limited to these areas. The white people in the study were more likely to have lesions on their brains.
Start Treatment Faster: Blacks started treatment with a disease-modifying therapy an average about 6 years after onset of symptoms, compared to 8 years elapsing between start of symptoms and initiation of treatment in the white group. Much like being diagnosed more quickly after symptom onset, it is hypothesized that perhaps the black participants were experiencing more severe or disabling symptoms and this led to their physicians recommending treatment earlier.
Interestingly, there were differences in the approach to treatment, as white participants had switched treatment more often. Also, 13 white participants had been treated with pulsed Solu-Medrol, while none of the black participants had received this type of treatment.
Mobility Differences: From this study, it appears that African Americans are somewhat more likely to develop mobility problems than white Americans. There was a 1.67-fold greater risk that black participants would eventually need a cane to walk. This also happened about 6 years earlier in the black group than in the white group (after 16 years vs. 22 years).
There seems to also be evidence that African Americans have a higher chance of becoming dependent on a wheelchair, however, a deeper analysis shows that part of the reason for this is because African Americans in the study were on average 2.5 years older at disease onset (being older at disease onset is predictive for more disability) than the white participants.
The median time until wheelchair dependency (when it happened) was 8 years shorter for African Americans (30 years after disease onset) than for whites (38 years after disease onset).
Source: BlackDoctor.org Copyright ©2012, BlackDoctor, Inc (26/06/12)