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 seriously affected. A test revealed that she had optic neuritis, an inflammation of the optic nerves.
Maha did not realise it at the time but, according to the Mayo Clinic, there is a 50 percent risk of developing MS following an attack of optic neuritis.
Experts say it occurs when the immune system mistakenly attacks the myelin, the substance covering the optic nerve, severely damaging it. Myelin is crucial for vision as it helps carry electrical impulses from the eye to the brain where they are converted into visual information.
‘I underwent an MRI scan,’ she says. ‘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, though, Maha says she was scared when she was told she has MS.
‘I had no clue what it was and was very worried,’ she says. ‘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.
‘But I did it because there was a paucity of information about the disease.’
Maha found that she was not alone. ‘There are very few options for newly-diagnosed patients to know and learn more about the disease, how to manage it and new advances in medication, among other things. I myself had a lot of questions but couldn’t get answers easily.’
Once she came to terms with the disease, Maha felt it was important that newly-diagnosed MS patients not end up feeling like she did when it came to tackling the disease.
Teaming up with expert neurologists from a few hospitals in Dubai, she launched MS Talks – a forum where patients could share their stories about their condition and learn about management techniques from the experts - two years ago (2015).
‘I feel it is 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.’
She says that she often had to visit the MS Society in the UK to learn about advances in disease management and medication. ‘That kind of information should be available to MS sufferers easily,’ she says.
‘Here, the patient wants the doctor to be more directed. But I think it is up to the patient to understand what the medications are available for the diseases and figure out what works for them.’
Maha also wants to make 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, your 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 is suitable for them; it is very individual specific.’
Sun is the other major factor. Just as Darwaish avoids too much of 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.’
She compares the knowledge and awareness about MS to what people knew about diabetes two decades ago.
‘Thanks to several awareness campaigns general people and those with diabetes know what it is and how to manage it. The same should happen to MS,’ says Maha.
The health care industry should include educating the patient as part of the diagnostic protocol.
Another change she would like to see is MS patients getting priority areas in car park areas just like those with challenges. ‘I’ve seen some MS sufferers struggle to walk after parking their cars in public areas,’ she says.
For more info: Facebook.com/MS Talks