x Abu Dhabi, UAESunday 23 July 2017

'I thought I was the only multiple sclerosis sufferer in UAE'

Two Emirati sufferers speak out in bid to raise awareness of little-known condition.

AL AIN // For years, Mubarak Al Ihbabi was convinced that he was the only person in the country suffering from multiple sclerosis.

"I had read online about cases in Saudi Arabia and Kuwait but had never come across anyone here," the Emirati said.

That was until last month, when he discovered that another woman who was applying to work with the police, where he is employed, also had MS.

"She introduced me to a group of patients who had the same condition," he said. "It was like I had entered another world. Until this point, I thought I was alone."

Mr Al Ihbabi, 32, from Al Ain, had MS diagnosed in 2009. Arriving at this diagnosis, however, was not easy.

A year earlier, the father-of-three started suffering from lower back pain. After visiting a private hospital, doctors informed him it was a herniated disc and treated him accordingly. Mr Al Ihbabi continued treatment for one year but he was not responding to the medication.

The pain soon manifested in different ways, too. First, it was loss of vision in his right eye, then his left, followed by pain and tingling in his right arm and leg, and then his left. Unhappy with the treatment he was receiving at the local hospital, Mr Al Ihbabi travelled to Germany for a second opinion.

"I told the doctor there about my symptoms and he refused to see the reports I had with me," Mr Al Ihbabi said. "The first thing he wanted done was an MRI."

The MRI scan, along with a series of other tests, confirmed the doctor's suspicions. MS was diagnosed and treatment began.

Since then, he continues to make follow-up visits to Germany every six months, with only one attack since the diagnosis.

Patients say the lack of understanding among the community as to what MS is makes it challenging for them to integrate.

"If someone has cancer, for example, people immediately know what it is and the burden this person is going through," he said. "For us, that's not the case. Two days, you'll be OK and, one week, you'll be tired. People think you're either lying or putting on an act."

Ahmad Al Maskari, a 30-year-old from Al Ain, feels the same. "Some people say there's nothing wrong with you, you're just being spoilt," he said. "I've encountered this at work and we try to explain it to our seniors but they just look confused and walk away."

Mr Al Maskari faced the brunt of the stigma when he was proposing to a woman for marriage. After his mother informed the bride-to-be's family about his condition, the direction of the conversation quickly changed.

"They started making unreasonable demands that couldn't be met. It was clear they were no longer interested," he said. "After that incident, my mum said she would no longer inform people about my condition. But I said no, tell them, this should not be kept a secret."

Mr Al Maskari and Mr Al Ihbabi decided to speak out to try to dispel misconceptions and get wider support from the community.

"This is not a contagious disease, nor is it purely genetic," Mr Al Ihbabi said. "Yes, the causes are unknown, but if you go to the US or Europe people would immediately recognise it. Here, they are not as aware. All we want is for people to understand us so that we feel we're among them and them among us."

mismail@thenational.ae