‘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

Friday - - Health - PHO­TOS BY AIZA CASTILLO-DOMINGO

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

29

Maha makes it clear that pa­tients and care­givers should understand that MS is a life­style dis­ease

Newspapers in English

Newspapers from UAE

© PressReader. All rights reserved.