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 gentleman until you notice the walker he uses to move around.
Darwaish reads my mind. ‘When you see me you won’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. Closer 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 a Muntada Talk bringing together local and international speakers for an explorative discussion on overcoming challenges with Multiple Sclerosis. 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, ‘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 it.
‘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 the 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, increased access to health care and availability of sophisticated imaging and investigative tools like magnetic resonance imaging (MRI),’ 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 weight lifting, 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 knees. ‘I got up and walked around for some time and the numbness disappeared,’ he says. But it kept recurring 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. ‘I had not been exercising for a long time and I realised my problem was worsening.’
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 battery of tests, including an MRI and spinal tap, the Emirati was diagnosed with MS.
Was he scared after the diagnosis particularly because it was a lesser known disease?
‘No,’ says Darwaish, his face a picture of calmness. ‘I wasn’t upset or angry or scared. I was very positive and was sure I would be able to overcome this with God’s grace.’
That positivity and optimism would be a major factor that would help him get back on his feet.
‘The doctors in Germany prescribed some medication for me but when I did a bit of research on those medications I found that they could have severe side effects; they could ruin the bones, the blood, lead to impotency…’
Instead, he decided to rely on physiotherapy and regular consultations first with Cleveland Clinic in Abu Dhabi, then at Amana Healthcare in Dubai to regain movement and halt the disease’s advance. He needs to take an injection once a week to keep the disease under control.
How has the disease changed Darwaish’s life?
‘In just about every way,’ he says. ‘MS, unlike a lot of other diseases, affects the entire body. Whichever areas have nerves are affected. It destroys your system. All of a sudden you can’t do anything; you get tired easily. But I try to be as active as I can.’
Staying active is one of the best therapies for the condition, say experts.
‘There are many medications called disease modifying therapies that can reduce the number of attacks and the number of new or active lesions in the brain/spinal cord,’ says Dr Amar. ‘Treatments are available to reduce the disease’s impact on patients and increase their functionality. And physical therapy and rehabilitation is an important part of MS management.’
Darwaish also decided to alter his diet plan.
‘My wife has been doing a lot of research online on MS and she came upon a diet that helps reduce symptoms of this disease,’ says Darwaish, who is a consultant for a clutch of companies in Dubai.
Called Paleo Diet, it involves eating only organic food; lean meats and fish, fruits, vegetables, nuts and seeds, and certain types of oils and fats.
Grains, milk and milk products, refined sugar, and other processed foods are out. ‘I have around nine cups of veggies a day,’ says the father of one, standing up and taking a few steps without his walker.
‘A woman with MS in the US who has been on this diet says it has helped change her life for the better. She can walk, talk, and move freely.’
Now, over a decade since he has been on the diet, and coupled with a generous dose of positivity, Darwaish is able to move around on his own relying on the walker only infrequently.
Up around 4 am, he exercises for a couple of hours including on a treadmill, has his breakfast before dropping his son to school and heading off to office where he helps a few companies with government related procedures.
‘I return by 1pm because heat and sun is not good for MS. It leaves you weak, tired and dehydrated; sun is the first enemy of MS.’
Darwaish is pinning hopes on reports of a new medication that claims to reverse the condition. ‘It costs Dh25,000 per injection but I’m truly looking forward to it,’ he says.
Dr Amar, however, clarifies that there is no cure for the disease as yet. ‘There is no cure for MS at this time. However, there are many ongoing trials to better understand the disease and find more effective treatments and hopefully a cure for the disease,’ he says.
Meanwhile, Darwaish works on staying active with a passion.
‘I used to be a hyperactive athlete. I used to run 10km every day. Now I struggle to walk 10m. It can be depressing,’ he says, for the first time a shade of sadness fleeting over his face.
Turning away he gently dabs the corners of his eyes. ‘But when you are connected with God and keep all your hope with him, you can go through it all,’ he says.
Is there a message he has for other sufferers of MS?
‘Stay positive. Be active. Always,’ says Darwaish, the positivity quickly returning to his face and attitude.
‘I often thank God that I don’t have ALS (Amyotrophic lateral sclerosis, a motor neuron disease where the average survival from onset to death is two to four years). At least I’m alive.’
What is multiple sclerosis?
- A potentially disabling disease of the brain and central nervous system, MS has no cure as yet.
- It occurs when the immune system begins to attack the myelin, the protective sheath that coats nerve fibres. This can damage the communication link between the brain and the rest of the body.
- Initial symptoms include numbness in limbs, tiredness, tingling sensation, vision problems, stiffness of muscles and urinary problems.
- Over time, MS can lead to nerve deterioration and permanent nerve damage.
- Some MS patients may lose the ability to walk independently. Long periods of remission without any new symptoms are also reported in some sufferers.
- Treatment can help quicken recovery from attacks and manage symptoms.
- Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.
- Proper diet and regular exercise has been found to be beneficial in managing the symptoms.