DUBAI // A multiple sclerosis diagnosis should not inhibit normal life, say those in Dubai living with the debilitating condition that attacks the central nervous system.
It is rarely fatal and it only shortens life span by a few months, so to mark World MS Day on Wednesday sufferer Sameer Barood, an Indian construction manager in Bur Dubai, said he is determined to show others life can carry on, while also calling for more specialist MS clinics in the UAE.
Mr Barood, 43, has had to give up driving as a result of his MS but he does not let it get him down.
“For me, living with MS is all about not giving up,” he said. “Working closely with my doctor and the use of new treatments has helped a lot.
“A once yearly drug therapy has especially been very effective for me.
“Overall, there is lack of understanding about the disease in the region. Often people who have been diagnosed with MS do not adhere to their treatment, and stop their medication, as the symptoms are not persistent.
“The financial burden can be high, so not everyone has access to medication, but along with help from family and friends, having the right support from healthcare institutions and the government can ensure that people with MS live a more fulfilling life.”
Research shows that MS affects about 25 to 50 people in 100,000 in Arab populations. Figures from last year show that the auto-immune disorder affects 64.44 per 100,000 people in Abu Dhabi, much higher than the World Health Organisation estimated average global prevalence of 30 per 100,000. Low vitamin D levels, smoking and genetic factors may be causes.
In Dubai, a report by a Rashid Hospital doctor listed the prevalence at 54.77 cases per 100,000 but that was in 2007 so the figure is likely to be higher now.
The disease attacks the central nervous system, and its severity is unpredictable. There is usually a progressive neurological deterioration over time, with half of patients needing assistance to walk 15 years after the disease has taken hold.
The cause of MS is unknown, with twice as many women affected than men, and more of Northern European descent. More than 2.3 million are affected worldwide, and usually they are aged between 20 and 40.
Its low-profile in the UAE has meant that other, more demanding healthcare issues such as diabetes dominate healthcare planning but Mr Barood would like to see specialist clinics for MS set up.
“Two years ago, my vision started to deteriorate, and then I began to lose the use of my legs,” said the father of two.
“It was extremely concerning as it was sudden, and I was otherwise fit and fairly young.
“There is no cure, I accept that, but I need help to adapt my life.
“The big problem in the UAE is that there is no dedicated MS centre to help people like me. Because your lifestyle changes so much, your family must also adapt and we all need help with that.
“It is very useful to speak with others with the condition, and families to see how they are coping. Something like this is very much needed in Dubai [though] the doctors have said the demand is not great enough, as it is still quite rare here.”
In 2012, a national taskforce was established by the Emirates Neurology Society to tackle MS in the UAE. Doctors insist improvements are being made.
Professor Jihad Inshasi, a consultant neurologist at Rashid Hospital, said a recent “explosion” of research has paved the way for better patient outcomes.
“The landscape of MS management is rapidly changing,” he said. “This is very exciting, because before 1993 there were no approved therapies for MS, and now we have seven injectable drugs and four oral medications.”
Recent changes include better monitoring tools to evaluate the severity of the disease, and how a patient is responding to treatment.
“Many of the changes required to enable people with MS to stay in employment, such as adaptations in the workplace or improved access to treatments, are achievable through better understanding of their challenges,” Dr Inshasi added.
nwebster@thenational.ae