LIVING WITH MULTIPLE SCLEROSIS
Multiple sclerosis, a lesser known inflammatory disorder that has no cure and which can leave sufferers with limited mobility, is a rising concern in the region. Anand Raj OK meets a patient who reveals the challenges of living with MS, and an expert who
Dressed in a grey kandoora and sporting a welcoming smile, Darwaish Abdulrazak Mohammad Al Bastaki offers a firm handshake before leading me into the modestly furnished living room of his villa in Dubai’s Al Barsha.
At first glance, there seems nothing wrong with the 40-something until you notice the walker he uses to move around. Darwaish reads my mind. ‘When you see me you wouldn’t guess that I have a health condition, right?’ says the soft-spoken man. ‘But that’s how this disease cheats you; outwardly you look normal but inside it’s destroying you.’
The disease the Emirati IT engineer is referring to is multiple sclerosis.
An inflammatory disorder that has no cure, it affects nerves and hinders the transfer of messages from the central nervous system to the rest of the body. Progressively, MS disables the patient, often leaving them with limited mobility.
Worldwide there are more than 2.5million MS patients. Close to home approximately 55 in every 100,000 people in UAE live with the condition, says a report from the Salama bint Hamadan Foundation, which in May this year hosted Muntada Talk, an event bringing together local and international speakers for an explorative discussion on overcoming challenges with MS. Earlier this year, at a medical summit in Dubai, Dr Suhail Al Rukn, consultant neurologist at Rashid Hospital and president of Emirates Neurology Society said that ‘multiple sclerosis is a rising concern in the UAE and the region. It is a difficult condition to diagnose due to the complexity and variability of symptoms from one person to the other. It can be a challenging condition to live with.’
Few know it better than Darwaish. Tackling the disease for close to three decades, he has been trying to stay up to date with everything related to the disease.
‘MS is very common in Europe,’ says Darwaish. ‘Germany alone accounts for some 120,000 sufferers.’ Dr Amar Elkhalifa seconds this. ‘MS is known to occur more frequently in countries further from the Equator,’ says the MS specialist neurologist at Amana Healthcare. ‘This may have something to do with vitamin D levels and the supportive role of vitamin D on the immune system.’
While the cause of the disease is still not clear, experts believe there is an interaction between several factors. ‘Immunologic, environmental, infections and genetics play a major role in causing the disease,’ says the doctor. According to him, the condition is more common among women. ‘Some studies suggest a ratio of 3:1,’ says Dr Amar, who was co-director of the Multiple Sclerosis Centre at Mount Auburn Hospital in Cambridge, Massachusetts, an affiliated hospital of Harvard Medical School.
So is there a rise in the number of MS cases in the UAE?
‘I can’t say if there is a rise in number but I can say for sure that more people with the disease get diagnosed because of multiple reasons including increased awareness of the disease among the public and physicians,
‘MS is a rising concern in the UAE and the region. It is a DIFFICULT condition to diagnose due to the complexity and variability of SYMPTOMS from one person to the other.’
increased access to healthcare and availability of sophisticated imaging and investigative tools like magnetic resonance imaging,’ he says. Darwaish would agree. When he first experienced a symptom of the disease – numbness in his legs – way back in 1988, few doctors recognised it as MS. ‘I was in my 20s, very active… actually a hyperactive athlete,’ says Darwaish. ‘I used to play football, was into weightlifting, taekwondo and the martial arts. I used to run 10K every day.’
Then one morning he woke up to find his left leg was numb from his toes to just below his knee. ‘I got up and walked around for some time and the numbness disappeared,’ he says. But it recurred every time he rested his legs for an extended period of time.
A few weeks later, he found that even after walking around, the numbness refused to disappear. ‘I consulted a doctor, then a neurospecialist, but they could not pinpoint the reason.’
The numbness lasted a month, then disappeared, recurring a year later to worry the young man again for a month. This pattern was repeated for around five years until in 1993 he found that the numbness persisted even after a month.
The loss of sensation that earlier had been only up to his calf, rose to past his thigh, his waist then up to his mid-chest. ‘Strangely I wasn’t worried. But I wanted to know what was happening to my body,’ says Darwaish. ‘I couldn’t walk fast or run and had to drag my left leg a bit.’ Little did the IT engineer know that he was experiencing a common symptom of MS.
‘The disease can present as one or multiple neurological symptoms like, but not limited to, loss of vision, double vision, weakness of the limbs, sensory symptoms, difficulty with walking, pain and fatigue,’ says Dr Amar.
A year after the symptoms had worsened, Darwaish visited a hospital in Germany where after undergoing a