Page last updated at 00:13 GMT, Saturday, 31 October 2009

'I thought I was alone with my MS'

By Jane Elliott
Health reporter, BBC News

Shiv Sharma
Shiv worries about reactions to MS within the community

When Shiv Sharma was diagnosed with multiple sclerosis he was the only South Asian he knew with the condition.

"I got a bit of a shock at the time," he said.

"I honestly thought I was a bit of a freak. It took me a good few months to come to terms with it."

Now, seven years later, about 12% of the MS patients treated at London's Charing Cross Hospital are of a South Asian background.

Study hopes

Dr Omar Malik, a consultant neurologist at Imperial College NHS Healthcare Trust, said he now wanted to know why UK-born South Asians, such as Shiv, seem to be more susceptible than those who migrated to this country as adults.

"South Asian MS is now becoming a common problem in the UK," he said.

The community feel that MS is one of the things that has brought shame on the community they believe they have either done something wrong in a current or previous life
Shiv Sharma

But he said the reason for this had not been studied.

So he and colleagues at St James's Hospital, Leeds, Luke's Hospital in Bradford and Leicester Royal Infirmary, are recruiting 200 South Asians with MS to analyse their DNA.

And hopes are high that the study will not only result in a greater understanding of the role of genes but may eventually lead to new therapies and even preventative treatment.

Dr Malik said that, as well as studying the genes, the researchers would be looking into the role of Vitamin D deficiency (the sun is an important source for vitamin D) and the Epstein-Barr virus, which may increase the risk of developing MS.

"While genes in European and migrant European populations have been studied extensively, South Asian MS has received very little attention," he said.

"The 'speculation' is that in Caucasians genes contribute approximately 40% to risk of MS and that 60% is environmental.

"We assume that South Asians may have an 'intrinsically' higher genetic risk but this is not exposed until the environmental factor is available."

He added that exposure to certain environmental factors in the early years of life - up to the age of 12 - were likely to play a particularly important role in determining risk.

Dr Doug Brown, research manager at the MS Society, said: "We are hoping that this study, which is part of the MS Society's innovative grant award scheme, will give researchers a better idea of how genes might play a role in MS susceptibility, with the eventual goal of opening up new avenues of research into the subject."

Changes needed

Mr Sharma, 44, volunteers for the MS Society, trying to increase awareness among his community about the condition.

He said there urgently needed to be a sea-change in attitudes.

"I know from my work that MS in our community can be shunned and hidden," he said.

"They don't understand it or know the implications of it.

MS is the most common neurological condition among young adults in the UK
Women are almost twice as likely to develop MS as men
Symptoms include a loss of sensation and balance, paralysis, pain and memory and vision problems

"If you come out and say you have MS they are happy to give you their old remedies but if they have a family member with it they do not disclose it at all.

"They wrap a curtain round the outside world and do not tell anyone.

"I have met people who have been diagnosed with MS at a younger age than myself and who were still living with their parents when they were diagnosed.

"The parent's reaction is not: 'How well are they, or what is it?' but: 'How am I going to get my son or daughter married now?'"

Mr Sharma said there was a tendency to believe that MS brought shame on the community.

"They believe they have either done something wrong in a current or previous life," he said.

"They feel that it is going to affect the marriage issue because women are more likely to get MS than men.

"And they wrongly worry that are going to pass on to their children. There is a lot of ignorance, misinformation and fairy tales."

Print Sponsor

Cash boost may aid MS diagnosis
05 Oct 09 |  Nottinghamshire
'Promising results' from MS drug
04 Oct 09 |  Norfolk
The real face of multiple sclerosis
08 Oct 07 |  Health
Keeping people with MS in work
23 Feb 03 |  Health


The BBC is not responsible for the content of external internet sites

Has China's housing bubble burst?
How the world's oldest clove tree defied an empire
Why Royal Ballet principal Sergei Polunin quit


Americas Africa Europe Middle East South Asia Asia Pacific