A d v o c a t e R e e a n n a H a R R i l a l t e l l s K a R e n a n n M o n s y w h y l i v i n g w i t h l u p u s i s l i k e wa g i n g w a r w i t h y o u r s e l f — a n d h o w s h e m a n a g e d t o f i n d p u r p o s e i n p a i n There Were

WKND - - Health -

p un­til very re­cently, most of us had prob­a­bly never heard of the chronic au­toim­mune dis­ease called lu­pus ( un­der­stand­able, con­sid­er­ing the dis­ease is so rare that only an es­ti­mated 0.05 per cent of peo­ple in the world have some form of it.) And even if we had heard of it, chances were it was ei­ther through the TV show House ( whose title char­ac­ter Dr Gre­gory House in­sists sev­eral times dur­ing the show that “it’s never lu­pus”), or be­caue we kept up with pop star Se­lena Gomez, who an­nounced her own bat­tle with the dis­ease last year.

What’s it like try­ing to live ev­ery­day with an im­mune sys­tem that’s es­sen­tially try­ing to kill you? Reeanna Erani Yo­geeta Har­ri­lal is a 33- year- old na­tive of Trinidad and Tobago, who first started ex­pe­ri­enc­ing symp­toms of the dis­ease as a child. Af­ter years of mis­di­ag­noses — un­for­tu­nately, all too com­mon in the case of lu­pus pa­tients — a test for lu­pus

To com­pli­cate mat­ters, I was asth­matic — I still am; but, grow­ing up, my asthma was re­ally out of con­trol and I had to be put on oral steroids. As I grew older, and en­tered ado­les­cence, my fin­gers, knees, and joints be­gan to ache as though I was 95 years old. I was only 15. Sim­ple ac­tiv­i­ties like run­ning or lift­ing things be­came re­ally dif­fi­cult be­cause my fin­gers would be very swollen. I was put on strong painkillers for the pain, and man­aged to pull along for a cou­ple of years. But around 17, I got re­ally ill — to the point where I was bedrid­den and would get re­ally bad fevers ev­ery 6- 8 months. The fever, how­ever, al­ways felt more like it was in­side me… and it wouldn’t break.

By now, I was be­ing tested for all sorts of pos­si­bil­i­ties, from HIV/ AIDS, lym­phoma and leukaemia to tu­ber­cu­lo­sis and even preg­nancy ( due to the ab­dom­i­nal pains — even though I as­sured the doc­tors there was no way that was a pos­si­bil­ity!). It was a bar­rage of test­ing and I had to go through the en­tire process. One doc­tor did sug­gest we test for lu­pus and mixed con­nec­tive tis­sue dis­or­der. But there wasn’t a lot of in­for­ma­tion about lu­pus at the time, in Trinidad and Tobago, where I lived. I re­mem­ber go­ing to the pub­lic li­brary in Trinidad — be­cause we didn’t own a com­puter — go­ing through the en­cy­clopae­dia and look­ing for lu­pus un­der the let­ter ‘ L’. And when I learnt that it was a chronic, de­bil­i­tat­ing au­toim­mune dis­ease, I got so scared that I no longer wanted to know whether I had lu­pus or not.

Ba­si­cally, if you have lu­pus, it means your im­mune sys­tem can­not tell the dif­fer­ence be­tween for­eign in­vaders and your own body, and there­fore at­tacks and de­stroys your own or­gans and tis­sues in the process. The in­for­ma­tion in my hands said if I had lu­pus, I’d die in 10 years — and that was if I was lucky! I sud­denly felt so cold, and all I said was: I don’t want to know — be­cause if I do, it’s just go­ing to kill me faster. I was a kid and it was too much for me. I wanted to bury my head in the sand like an os­trich, and hope it would all just go away.

in­spi­ra­tion to ALL: r w mm m W ld L D M 10; w n l y all aw d w m l w t d d & t b

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