Rais­ing aware­ness on lu­pus

Vic­tim launches cam­paign, in­vites oth­ers to get in­volved

Pretoria News - - HEALTH - HE­LEN GRANGE

CHEST pains and painful joints. These were the symp­toms that plagued Si­bongile Ko­mati for months be­fore she was di­ag­nosed with lu­pus, a chronic auto-im­mune con­di­tion in which the body turns on it­self.

“I went to dif­fer­ent doc­tors, and, ini­tially, I was pre­scribed anti-de­pres­sants, which I took for two months.

But the chest pains were still there, and my joints were still sore. I was also short of breath and I was tired all the time,” re­calls the 48-year-old from Pre­to­ria.

A car­dio X-ray then showed that her lungs looked like a “bunch of grapes” and she was at high risk of a pul­monary em­bolism (clot or clots block­ing one of the pul­monary ar­ter­ies in the lungs).

“I’m lucky I went for that X-ray, be­cause I could have died. It was then that the lu­pus di­ag­no­sis was made,” says Ko­mati.

In lu­pus suf­fer­ers, the body’s im­mune sys­tem be­comes hy­per­ac­tive and at­tacks nor­mal, healthy tis­sue, and the re­sult is in­flam­ma­tion, pain and dam­age to tis­sue.

Red her­ring symp­toms are typ­i­cal of the dis­ease, which can ap­pear to be a num­ber of other con­di­tions, from mild to se­ri­ous. The most com­mon symp­tom is skin rash, which ap­pears on the face in a but­ter­fly pat­tern, thus the name lu­pus which is Latin for “wolf”.

Joint pain and crip­pling fa­tigue are also com­mon, but a host of other symp­toms may be present, in­clud­ing fever, swollen lymph glands, mouth ul­cers, hair loss, sen­si­tiv­ity to the sun, headaches, fin­gers turn­ing white or blue, short­ness of breath, anaemia, seizures, high blood pres­sure, in­flam­ma­tion of the mem­branes around the lungs and heart, kid­ney prob­lems and de­pres­sion. Symp­toms can also come and go – pe­ri­ods of flare-ups and then re­mis­sion.

Left un­treated, lu­pus typ­i­cally leads to can­cer, heart, liver or kid­ney prob­lems and os­teo­poro­sis. It can even cause blind­ness.

“Lu­pus at­tacks the blood ves­sels es­pe­cially, so all your or­gans can be af­fected,” says Dr Phashe Ma­ga­gane, who treated Ko­mati and be­came a spe­cial­ist in lu­pus as a re­sult of his child’s di­ag­no­sis.

“De­pend­ing on the type of lu­pus, it can start in the brain, thus the headaches, or your heart and kid­neys may be af­fected. It’s a killer, and with­out di­ag­no­sis and treat­ment, life ex­pectancy with lu­pus can be as lit­tle as two years.”

The most se­ri­ous type of lu­pus is called sys­temic lu­pus ery­the­mato­sus or SLE.

Sys­temic means it af­fects the whole body and ery­the­mato­sus means red.

Statis­tics show that SLE may be as high as one case per 2 500 peo­ple in cer­tain pop­u­la­tions, yet it is the most dif­fi­cult to di­ag­nose, due to it ap­pear­ing as many other con­di­tions.

“There is of­ten a de­lay of many years be­fore a di­ag­no­sis is made, which is why it is hard to gauge its preva­lence. Un­for­tu­nately, the longer it is left the more dif­fi­cult it is to treat,” says Ma­ga­gane.

Di­ag­no­sis is based on a com­bi­na­tion of blood tests and an eval­u­a­tion of clin­i­cal cri­te­ria. But as in Ko­mati’s case, there is of­ten a de­lay in di­ag­no­sis. “Women es­pe­cially just tend to carry on un­til a lot of dam­age has been done,” says Ko­mati.

Peo­ple with lu­pus are ge­net­i­cally pre­dis­posed to it, so it can’t be trans­mit­ted, and it is be­lieved that symp­toms ap­pear with en­vi­ron­men­tal trig­gers.

It is 10 times more com­mon in women than in men, with black and Asian women more vul­ner­a­ble than white women, and typ­i­cally de­vel­ops in the child-bear­ing years of 15 to 35. “Ec­topic preg­nan­cies or spon- taneous abor­tions are com­mon with lu­pus suf­fer­ers, and this is one of the symp­toms I look out for,” says Ma­ga­gane.

Ko­mati also lost her baby to an ec­topic preg­nancy. “It was a mis­er­able time for me and my fam­ily. It was only when I started do­ing my own re­search and un­der­stand­ing my di­ag­no­sis, that things im­proved,” she says.

There is no cure for lu­pus, but the symp­toms can be man­aged with med­i­ca­tions that re­lieve pain and in­flam­ma­tion, re­duce the chances of or­gan dam­age, and sup­press the im­mune sys­tem. Drugs pre­scribed in­clude anti-in­flam­ma­tory and anti-malaria drugs, painkillers, cor­ti­cos­teroids, in­jecta­bles for treat­ing anaemia and, in more se­ri­ous cases, im­muno­sup­pres­sants and chemo­ther­apy drugs.

Anti-malaria med­i­ca­tion is par­tic­u­larly ef­fec­tive in treat­ing cer­tain types of lu­pus, in­clud­ing the skin dis­or­ders (dis­coid lu­pus, which the singer Seal has, and sub­a­cute cu­ta­neous lu­pus), mouth sores and rheuma­toid arthri­tis.

Ma­ga­gane says the steroids and anti-can­cer med­i­ca­tion “helps to pro­tect the or­gans”.

It has been eight years since her lu­pus di­ag­no­sis, and Ko­mati is on a cock­tail of drugs – nine pills a day taken at three in­ter­vals.

“I take anti-malaria tablets, anti-in­flam­ma­tory med­i­ca­tion and painkillers, which all help to ease the symp­toms,” says Ko­mati.

“The med­i­ca­tion is ex­pen­sive and it’s dif­fi­cult to pre­dict how I’m go­ing to feel. Some days I feel fine, oth­ers I can’t get out of bed. Ev­ery day is dif­fer­ent.”

With treat­ment, be­tween 80% and 90% of suf­fer­ers can ex­pect to live a nor­mal life­span.

“I just keep a close watch on my con­di­tion, and with ex­cel­lent med­i­cal sup­port, and my friend­ship with other lu­pus suf­fer­ers, I keep the dis­ease under the best con­trol I can,” says Ko­mati.

She has gone on to help found Lu­pus, the But­ter­fly Ef­fect Foun­da­tion and is its chair­woman.

The newly formed not-for-profit or­gan­i­sa­tion has been es­tab­lished to raise aware­ness about the dev­as­tat­ing health con­di­tion and to sup­port those af­fected by it.

She in­vites lu­pus suf­fer­ers and their sup­port­ers to be­come in­volved in the cam­paign. Visit www.lu­pus­foun­da­tion.co.za

I just keep a close watch on my con­di­tion, and with ex­cel­lent med­i­cal sup­port, and my friend­ship with other lu­pus suf­fer­ers, I keep the dis­ease under the best con­trol I can… Si­bongile Ko­mati

Lu­pus pa­tient Si­bongile Ko­mati of Pre­to­ria has done a life coach­ing course in or­der to be of greater sup­port to the com­mu­nity of lu­pus suf­fer­ers.

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