Stigma of multiple sclerosis is endangering lives in the UAE

DUBAI // The stigma associated with multiple sclerosis is preventing people from seeking help.
About 2,000 people in the UAE suffer from MS, when the body's immune system attacks the protective sheaths that cover nerve fibres in the central nervous system, which can result in a number of physical and mental problems.
Although there is no cure for the condition, which can cause irreparable damage to the nerves if left untreated, attacks can be prevented and the impact they have on the nerves can be reduced.
However, a lack of understanding about the disease and widespread misconceptions is putting people in danger.
"Many might be suffering from the symptoms but are reluctant to come forward," said Sultan Saeed Al Nuaimi, vice chairman of the Multiple Sclerosis Society. "And it's sad because, with early diagnosis and treatment, few people will reach the point of having a disability."
When Ahmad Al Maskari, an Emirati from Al Ain, was found to have MS in 2007, his treatment involved weekly injections of a drug that prevented recurrent attacks. But for 24 hours after the injection he suffered from extreme fatigue and pain.
"People would see that you're always tired and think there's something wrong with you to be needing that many injections," he said. "They would prevent me from doing normal daily tasks. I got sick of people's comments and stopped taking the medication for a year."
Mr Al Maskari was taken to hospital with an attack on the first day of Ramadan in 2008. Since then he has been taking his medication with no recurrent attacks.
"The problem is this disease is not as well addressed as others," said Dr Taoufik Al Saadi, head of neurology at Sheikh Khalifa Medical City. "For example, fatigue is a very common symptom, but many times people think the individual is just making up an excuse. We definitely need to educate the public."
The disease has long been more prevalent in countries further away from the equator, and it is thought there may be a connection linked to exposure to sunlight in early years. In 2008, it affected 240 in every 100,000 people in Canada but only 135 in 100,000 in the US.
In the UAE, the figure was 26, slightly lower than the global average of 30.
"The fact that we're seeing a considerable number of patients here is interesting," Dr Al Saadi said.
"This may mean there are other local factors that may contribute to the cause of the disease that need to be looked at."
With the precise cause for MS not fully understood, it is difficult to determine why cases exist in the region. There are a number of observations, however, from changes in lifestyle to improved healthcare services leading to better diagnosis.
Of all the sufferers in the UAE, only 60 are signed up with the Multiple Sclerosis Society, which launched a national campaign last year to increase public awareness of the disease. It also holds a number of support groups and tries to provide financial assistance through donations.
"We've provided hospitals with a form that patients can fill out so that we can reach out to them, but most choose not to," Dr Al Saadi said. "Patients fear word will get out and women are afraid that this will reduce their marriage prospects and affect their reputation. These are cultural issues we need to address."
The society started its own database this year. With no registry available, it relies on numbers reported from hospitals. To date, they have about 2,000 reported cases between the ages of 19 and 65 across all nationalities.
Another challenge is funding the cost of treatment, which can range from Dh5,000 to Dh12,000 a month.
Treatment for MS is covered for all individuals insured by Daman, the national health insurance company, which covers many employees in Abu Dhabi emirate. Last year, Daman had 500 members with the condition. However, those in other emirates without compulsory health insurance are often left in the lurch. Many must pay out of their own pockets or turn to charities for help.
With more cases being diagnosed, experts say one thing is certain - better access to treatment and improved public awareness is necessary.
"Most of these individuals are capable of completing their daily tasks and positively contribute to the country. With early treatment, they can continue doing so," Mr Al Nuaimi said. "This is something that everyone needs to know."
mismail@thenational.ae