Growing pains

Around 2,000 people in the UAE suffer from multiple sclerosis and the number is on the rise. What is this disabling disease?
The Community By Rose Hockley
Published on August 1, 2013
Growing pains

DUBAI Last year Dancing With The Stars contestant Jack Osbourne was diagnosed with the debilitating neurological disease called multiple sclerosis, and now new research suggests the number of people living with this potentially devastating condition in the UAE — around 2,000 — are increasing every year. Multiple sclerosis (MS) disrupts the transmission of signals in the central nervous system (CNS) as the body’s immune system attacks the protective sheaths that cover nerve fibres, thereby affectting balance, co-ordination and vision.

Sue Farrington, Director for Education and Communication at the Multiple Sclerosis Society, explains that MS is estimated to potentially reduce a person’s lifespan by no more than five years. “Generally, you don’t die from MS. What you might be looking at is your quality of life being reduced. This is a condition that people have for life. That’s quite a burden to carry,” she says. It’s a burden that Jack Osbourne, who has the most common form of the disease, relapsing remitting MS, found he was carrying last year, just weeks after the birth of his first child. There are four different forms of MS, and the type Osbourne has means sufferers have relapses (an unpredictable flare-up of symptoms) followed by remissions, where symptoms can sometimes disappear completely.

The 28-year-old son of Sharon and Ozzy Osbourne says: “I think the scariest moment in my life was when I… lost the vision in my right eye and came to find out that the numbness in my legs from 18 months earlier was also a result of multiple sclerosis. “MS is unpredictable, which means I never know how or when it’s going to affect me. Whether I problems with my vision, numbness, fatigue — that’s just something my family and I now have to think about every day.” 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,” says 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 says. “They would prevent me from doing normal daily tasks. I got sick of people’s comments and stopped taking the medication for a year.” 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,” says 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.” MS occurs when a protein called myelin, which surrounds nerve fibres and helps them conduct electrical impulses, is damaged
or destroyed. This disrupts the nerves’ ability to conduct electrical impulses to and from the brain. In MS, myelin is lost in multiple areas, leaving scar tissue called sclerosis which produces the symptoms of the disease. Symptoms vary depending on which part of the CNS is affected, but the disease can cause loss of vision (usually only in one eye), muscle stiffness leading to uncontrolled muscle movements, difficulties with balance and co-ordination, and extreme fatigue. “MS affects different people in different ways,” explains Farrington. “For some people it may be their sight that’s the first indicator there’s something wrong, or it may be that their speech becomes slurred, or they have problems with their mobility.” However, while it’s known what happens inside the body to cause the symptoms of MS, it’s not known why it happens or what the specific causes are. It’s thought to be an autoimmune condition, as the body is attacking itself when myelin is destroyed, and recent evidence suggests some people may have a genetic predisposition to develop MS. However, Farrington says: “We think there’s some sort of link to genes, but it’s probably a combination of genes and other things, as not everyone with the genes will develop MS. “There are a number of environmental factors too. MS is more common the further away you live from the Equator, and there’s growing research that suggests a lack of vitamin D could be a factor in causing it.” 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 says. “This may mean there are other local factors that may contribute to the cause of the disease that need to be looked at.” Research is also looking into the role of viruses in triggering the disease, but no single virus has been identified as a definite contributor. However, there’s growing evidence that the Epstein Barr virus, which is commonly caught in childhood, may act as a trigger. A number of studies have also found smoking appears to increase some people’s risk of developing MS, although it’s unclear why. 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. Disease-modifying drugs are currently used to slow the progression of the disease and reduce the number of relapses. However, the drugs are not suitable for all people with MS.

Physiotherapy, oxygen treatment and diet and exercise are also thought to help manage symptoms. However, Farrington is cautious about the effects of diet and exercise on MS.“Everyone needs to lead a healthy lifestyle because of its impact on wellbeing. However, there’s no absolute proof that if you adopt a healthy lifestyle it will minimise your MS.” However, a good diet, exercise, oxygen treatment and physiotherapy can make a huge difference to the course of MS. Interestingly, 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 says. “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,” Al Nuaimi says. “This is something that everyone needs to know.” While the search goes on for a cause and a cure, treatments for relapsing remitting MS, which often eventually develops into another type of the disease, secondary progressive MS, have greatly improved. There are plenty of people who’ve had an MS diagnosis for 10-20 years who are still able to walk and live life relatively well, probably because they’ve taken control of their condition and done something about it in terms of exercise and diet.

READER’S VOICE

1. Do you know anyone suffering from multiple sclerosis who has not sought treatment so far?
2. Do you think a lack of understanding about the disease and widespread misconceptions is putting people in danger?
Do send in your feedback by writing to us at thecommunity@skyhorizonmedia.com

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