Puzzle of why some black Caribbeans more prone to suffer from MS
London Letter: a section of the black Caribbean grouping in Britain is more susceptible to multiple sclerosis
The rising figures for black Caribbean MS in Britain sufferers poses issues about culturally sensitive care for the National Health Service. Photograph: Dominic Lipinski/PA Wire
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 Trust in Britain.
Today, however, the the MS 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, r 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.