At least 200 people, mainly women who first detected the disease before reaching the age of 40, today suffer the debilitating impact of multiple sclerosis (MS) in T&T.
The statistic keeps changing each time there is a public awareness campaign, because there are numerous patients battling the disease who have preferred to suffer in silent anonymity, but reach out to the glimmer of hope concerted action often brings.
The life changing disease, which attacks the central nervous system and leads to crippling physical disability, has been tracked by researchers to a genetic predisposition, though what actually triggers it remains something of a medical mystery.
And while treatments and other medical interventions have in some instances eased the burden of MS, a cure has not yet been found.
For former government minister, author and retired university lecturer, Dr Daphne Phillips, a 2000 diagnosis was life-changing.
"I knew about it. I knew it existed," she told T&T Guardian. In fact, Phillips' elder sister, Merle Collins, died in 2001 from complications associated with the disease. In her case, the decline was rapid.
For Phillips, MS symptoms appeared slowly and in intervals. First came the initial diagnosis in 2000, no problems until 2004, and then three "attacks" between 2006 and 2008.
The true transition to full-fledged treatment and care however came in 2009.
By then, Phillips had already served as Minister of Culture and Gender Affairs, Minister of Community Development, Culture and Women's Affairs in successive United National Congress (UNC) led administrations.
In 2014, she was awarded the Medal for the Development of Women (Gold) for her "outstanding contribution to the development of women's rights and issues in Trinidad and Tobago." She had to be helped to the stage to receive her award.
She continues her political work as Education Officer of the UNC and says while the disease has had a big impact on her physically, there has been no reduction in intellectual capacity.
Attorney at law, power chair "footballer" and MS sufferer, UK-based Trinidadian Sterling Seukaran uses a wheelchair, crutches, rollator (rolling walker) and mobility scooter to make his way around on his own.
He insists that among the points to be made to those who have been diagnosed is "this does not mean that one will always end up in a wheel chair.
"It is important to know that even if you have MS you can still have a full and active life," he said.
For IT specialist, Helen Hosein-Mulloon, an MS diagnosis has had "a profound effect" on her life. In some ways negative, but in others, positive.
"I decided that I was going to enjoy my family time with my children before they became adults and to be more serious about our health," she said.
"I also decided that I was not going to let the illness get the better of me, physically and mentally."
For her courage, one friend has dubbed her "Warrior Squared"–"squared" because Hosein-Mulloon has also been a cancer survivor for the past six years.
The "warrior" tag could also have also been earned because her MS diagnosis came as she prepared to travel to Germany in 2006 to witness the participation of the Soca Warriors in the Football World Cup.
"When I was about to go to Germany, I started seeing a line in the vision of my left eye," she said.
"A local ophthalmologist suggested that the optic neuritis may be caused by MS."
Hosein-Mulloon had had suspicions that something might be wrong with her.
"For a short while before this, I found that I had tingling in my spine after taking a hot shower," she told T&T Guardian.
In her case, the condition developed gradually.
The inflammation of the optic nerve picked up by the ophthalmologist cleared up after a few weeks, "but the tingling continued and over the next eight months, different symptoms became evident and worsened after my mother's death following a brief illness."
"Though I did many of the tests for MS, I did not have enough of the criteria to categorically say that I had MS," she added.
"After another flare, I was officially diagnosed."
To both Phillips and Hosein-Mulloon an MS diagnosis has not meant the end of the world. But the situation differs especially within financially-strapped households where a Chronic Disease Assistance Programme (CDAP) shortage of interferon beta drugs means patients have to come up with as much as $10,000 a month.
The T&T Guardian understands there is currently a shortage of this vital drug.
There is also the need to ensure there exist support networks both for the infected and the affected.
"Awareness makes thing more accessible and awareness increases empathy," Hosein-Mulloon advised.
For such reasons, the Multiple Sclerosis Society of T&T (MSTT) has been launched with Phillips at the helm. It is the culmination of years of effort led in part by neurologist, Dr Azad Esack, who has also been engaged in extensive research into the treatment of the disease.
Early treatment has been found to be effective in delaying the worst effects of the disease.
In the United States where up to 350,000 people have been diagnosed with MS, medical marijuana has been increasingly prescribed to deal with some symptoms. Sativex, a "cannabinoid" drug is widely used in the UK and Europe to treat stiff and rigid muscles resulting from MS.
For now, in T&T, the focus is on raising awareness of MS and ensuring there are adequate policy, infrastructural and social provisions that recognise the prevalence of MS among us.
What is ms?
What exactly is MS?
Multiple Sclerosis is a disease that affects nerves in the brain and spinal cord.
The nerves in these areas are surrounded by a protein called myelin, which helps signals from the brain get to the rest of the body.
The myelin becomes damaged in people with MS because the immune system mistakes it for something that shouldn't be there and attacks it.
This means signals from the brain struggle to get through properly.
What are its effects?
MS affects the body in different ways and has many symptoms, but people with MS won't normally experience them all.
Some of the most common symptoms include: feeling very tired during the day; bladder problems; problems with balance and co-ordination–for example when walking.
Problems seeing–like blurring and loss of vision are also common, as is muscle stiffness and uncontrolled movements, or spasms.
How long does MS last for?
At the moment there is no cure for MS, so there's no quick fix.
Its effects can come and go. For some people they get worse over time.
Eighty-five per cent of people have 'relapsing remitting' MS where symptoms are mild for a while, or even disappear completely.
However their symptoms can suddenly flare up again in the relapse stage.
After about ten years about half of people with this sort of MS develop 'secondary progressive' MS.
At this stage, symptoms get worse and there are fewer periods of remission.
How can it be treated?
Although there's no cure, there are ways to make living with MS easier.
Drugs can help reduce the frequency and seriousness of individual symptoms and also cut down the number of relapses.
Changing diet, exercising or physiotherapy can also help.
Source: BBC