‘A support system is important for managing MS’
Maha Abbas was scared and worried when she was diagnosed with multiple sclerosis. Determined that other newly diagnosed patients should not suffer her fate, she launched an initiative to spread knowledge and offer support to MS patients, says Anand Raj OK
Dubai-based Maha Abbas experienced her first attack of multiple sclerosis (MS) when she was just 17. ‘Until then, I didn’t know anything about MS,’ she says. The Bahrain-born Dubai resident found that her vision in both eyes was affected. A test revealed she had optic neuritis, inflammation of the optic nerves.
Maha did not realise it at the time but, according to the Mayo Clinic, there is a 50 per cent risk of developing MS following an attack of optic neuritis. Experts say it occurs when the immune system mistakenly attacks myelin, the substance covering the optic nerve, severely damaging it. Myelin helps carry electrical impulses from the eye to the brain where they are converted into visual information.
‘I underwent an MRI scan,’ says Maha. ‘Generally MS would show up in the report, but in my case it did not.’ She treated her eye condition and everything seemed okay until at age 23 she had a second MS attack. ‘This one was a motor attack and I lost motor function in the right side of my body,’ says the 30-year-old.
Unlike her fellow sufferer Darwaish Abdulrazak Mohammad Al Bastaki, Maha says she was scared when she was told she has MS. ‘I had no clue about MS and was very worried. And of course, the first thing I did was to Google the disease.’
Maha, who has since launched MS Talks, a support group that disseminates knowledge about the condition and offers help and support to MS patients, their carers and families in the UAE, says that searching the web for the health problem was ‘a big, big mistake because there’s a lot of misinformation also on the net. But I did it because I didn’t know where else to go.’
Maha found she was not alone. ‘There are very few options for newly-diagnosed patients to know and learn more about what the disease really is and how to manage it, among other things.’
Once she came to terms with the disease, she felt it was important that newlydiagnosed MS patients not end up feeling like she did.
Teaming up with expert neurologists in Dubai, two years ago she launched MS Talks – a forum where patients could share their stories about their condition and learn about management techniques from experts.
‘I feel it’s important for patients to find out more about the different types, symptoms and treatments of the disease. We also have a doctor’s corner where patients can seek professional advice.’
While her first MS Talks drew around 50 people, the numbers soon grew with her last one earlier this year attracting more than 100. So is there an increase in awareness about the disease?
‘I would say it’s not enough,’ says Maha. ‘A lot more needs to be done. For instance, the patient here needs to be empowered enough to understand the various kinds of medication available.’
Maha also makes it clear that patients and caregivers should understand that MS is a lifestyle disease. ‘Your eating habits, exercise regime, whether you smoke, how late you stay up at night, stress levels, how much time you spend in the sun, all this could have a bearing on MS management,’ she says. ‘And this is what our MS Talks is all about.’
Underscoring experts’ views, she says exercise and diet are important factors to managing the disease. ‘You can choose anything that suits you – pilates, yoga, weights – but you need to be disciplined about exercising regularly.’
She sounds a note of caution about diet. ‘Online you will see a lot of diets that claim to be suitable for MS patients. But the patient needs to know which one is suitable for them; it is very individual specific.’
Sun is the other major factor. Just as Darwaish avoids too much sun, Maha too says she avoids going tanning or being out in the strong sun. ‘Sun leaves MS sufferers extremely uncomfortable.’
What are the major challenges MS sufferers face?
‘In some parts of the world, when a person is diagnosed with MS, they get a booklet and a kit which has all the information about managing the disease. That would be a welcome initiative here. Because it is a lesser-known disease, patients here feel they are alone and have no one to help them. A support system is very important.’
The healthcare industry should include educating the patient as part of the diagnostic protocol, she adds.
Another change she would like to see is MS patients getting priority areas in car parks just like those with other physical challenges. ‘I’ve seen some MS sufferers struggle to walk after parking their cars in public areas,’ she says. For more info, go to Facebook.com/MS Talks