Jensen La Vende 

Se­nior Re­porter 

jensen.lavende@guardian.co.tt 

De­spite hav­ing a neu­ro­log­i­cal ill­ness that can lead to im­mo­bil­i­ty and death, pa­tients with Mul­ti­ple Scle­ro­sis (MS) in Trinidad and To­ba­go are men­tal­ly stronger than their coun­ter­parts in oth­er coun­tries.

This was one of the find­ings shared dur­ing an MS sym­po­sium last Thurs­day at Am­phithe­atre C, Er­ic Williams Med­ical Sci­ences Com­plex. The event fea­tured a team of clin­i­cal and non-clin­i­cal ex­perts in­volved in MS care and was held un­der the theme: “Shap­ing the Fu­ture of Mul­ti­ple Scle­ro­sis Care in Trinidad & To­ba­go: A Mul­ti­sec­toral Di­a­logue.”

Dr Hen­ry Bai­ley, an eco­nom­ics lec­tur­er at the Uni­ver­si­ty of the West In­dies, said MS pa­tients in this coun­try have a stronger men­tal health thresh­old than those abroad.

“For some rea­son, as MS pa­tients in Trinidad get old­er, they re­port bet­ter men­tal and emo­tion­al well-be­ing. This is re­al­ly weird. Again, this has not been ob­served any­where else in any oth­er ill­ness in Trinidad, nor among MS pa­tients in­ter­na­tion­al­ly.”

Bai­ley said gov­ern­ment needs to re­think how it ap­proach­es the pro­cure­ment of drugs to bet­ter meet the needs of pa­tients. He said the cost-ben­e­fit for many ill­ness­es should not be mea­sured sole­ly in dol­lars and cents, but in terms of pa­tient well-be­ing.

An­oth­er speak­er, Con­sul­tant Neu­rol­o­gist Dr Avidesh Pan­day, said he and his team aban­doned the glob­al treat­ment mod­el for MS be­cause it did not serve their pa­tients well. That ap­proach typ­i­cal­ly be­gins with the least ef­fec­tive drug, cho­sen for hav­ing the fewest side ef­fects, and pro­gress­es de­pend­ing on the pa­tient’s re­sponse.

“Why wait un­til you have failed med­ica­tions to start with the high­ly ef­fec­tive treat­ments? It's bet­ter you start treat­ment ear­ly and have less dis­abil­i­ty. So, this is why for those who have been part of the clin­ics here, you would have seen that in 2018, we changed our ap­proach here. We start us­ing high­er ef­fec­tive med­ica­tions at an ear­li­er date so that you are more func­tion­al and you stay bet­ter for longer.”

Bai­ley said he could not con­firm whether Pan­day’s treat­ment ap­proach was re­spon­si­ble for the stronger men­tal re­silience seen among MS pa­tients.

Pan­day said it was long over­due for MS care to have its own ded­i­cat­ed clin­ic. He ex­plained that such a clin­ic would serve two main pur­pos­es: to main­tain an ac­cu­rate na­tion­al reg­istry of MS pa­tients and to pro­vide more co­or­di­nat­ed treat­ment.

He said more than 95% of MS pa­tients in Trinidad re­ceive care at pub­lic health in­sti­tu­tions, though many are ini­tial­ly di­ag­nosed in the pri­vate sec­tor be­fore be­ing re­ferred in­to the pub­lic sys­tem.

“In the past, a lot of pa­tients, sor­ry, I stand cor­rect­ed, a fair num­ber of pa­tients sought care abroad. And I can say that the re­verse is hap­pen­ing now, where about four to six pa­tients who have Trinida­di­ans, who have left Trinidad to work, may have dual cit­i­zen­ship else­where, come back to Trinidad for their treat­ments. And that is a tes­ta­ment to the evo­lu­tion and ac­cess to care that we have pro­vid­ed here.”

MS pa­tient Gillian Ro­dul­fo spoke about the pain of be­ing mis­di­ag­nosed be­fore re­ceiv­ing the cor­rect di­ag­no­sis.

She said her first symp­toms were numb­ness in her legs back in 2012. At the time, her doc­tors told the school bus dri­ver it was due to diesel fumes. She be­lieved this ex­pla­na­tion, es­pe­cial­ly since the prob­lem less­ened when­ev­er school was closed — un­til it didn’t.

Even­tu­al­ly, she was hos­pi­talised. Doc­tors be­lieved fi­broids were press­ing against nerve end­ings, caus­ing the numb­ness. Surgery was rec­om­mend­ed — un­til she got a sec­ond opin­ion and an MRI led to a prop­er di­ag­no­sis.

“That MRI changed every­thing. By Feb­ru­ary 2013, I was ad­mit­ted to the Sev­enth-Day Ad­ven­tist Hos­pi­tal im­me­di­ate­ly af­ter the re­sults came in. And I was there for two weeks and let me tell you, those two weeks were some of the hard­est days of my life. The day I was ad­mit­ted, I couldn't feed my­self, I couldn't brush my teeth or comb my shoul­der-length hair. The hard­est part for me was need­ing to get help to clean my­self af­ter I used the toi­let,” she said, sti­fling her cries.

Pan­day said sto­ries like Ro­dul­fo’s should not be re­peat­ed. He said his fo­cus is on ed­u­cat­ing doc­tors to bet­ter recog­nise the signs of MS. He cred­it­ed past ed­u­ca­tion cam­paigns with speed­ing up di­ag­noses, but said treat­ment needs to be more stream­lined so pa­tients don’t have to make mul­ti­ple trips to pub­lic fa­cil­i­ties.

“What if we had neu­rol­o­gy, urol­o­gy, men­tal health, etc., next door to each oth­er, so at the end of your clin­ic vis­it, you have every­body. And this is my dream, and the dream of many oth­ers. It is not lim­it­ed to mul­ti­ple scle­ro­sis, but many oth­er neu­ro­log­i­cal con­di­tions. I hope one day we can do this, have a mul­ti­dis­ci­pli­nary team where the MS pa­tient sees neu­rol­o­gy, men­tal health, phys­i­cal med­i­cine, re­ha­bil­i­ta­tion, med­ical, so­cial work­er, and di­eti­cian, all un­der one roof.”

MS is de­fined as an in­flam­ma­to­ry de­myeli­nat­ing dis­ease of the cen­tral ner­vous sys­tem, char­ac­terised by on­go­ing dis­ease ac­tiv­i­ty with pro­found ef­fects on pa­tient in­de­pen­dence and qual­i­ty of life.