Help­ing oth­ers through her pain

Si­bongile Ko­mati is us­ing her ill­ness to reach out to other suf­fer­ers of lu­pus

Move! - - CON­TENTS - By Sanele Mkhize

WHEN you are di­ag­nosed with a chronic and life-threat­en­ing dis­ease, it is of­ten hard to find a new lease on life. But not Si­bongile Ko­mati (49), who is the founder and direc­tor of the Lu­pus Foun­da­tion South Africa. When she was di­ag­nosed with lu­pus nine years ago, she did not wal­low in self-pity, but de­cided to get a bet­ter un­der­stand­ing of her con­di­tion in order to help oth­ers. Lu­pus is when your body’s im­mune sys­tem be­comes hy­per­ac­tive and at­tacks nor­mal, healthy tis­sue, with com­mon symp­toms such as in­flam­ma­tion and dam­age to joints, skin and kid­neys. At present there is no real cure for it and those suf­fer­ing from it are of­ten stig­ma­tised.

LIFE BE­FORE LU­PUS

Raised in Lyn­nville, Wit­bank, Si­bongile is the fourth of six chil­dren. She ma­tric­u­lated from Mphanama Se­condary School in Mid­del­burg in 1986.

“I then did my teacher’s diploma at Teach­ers Col­lege of Ed­u­ca­tion (TCE) in Soshanguve and qual­i­fied in 1990. I worked as a teacher for a year at Zacheus Malaza Pri­mary School in Wit­bank, and af­ter I got mar­ried, I de­cided to fol­low my dream of be­com­ing an at­tor­ney and did a B. Proc. de­gree at what was then known as Vista,” says Si­bongile.

She was then em­ployed at the Fi­nan­cial Ser­vices Board as a se­nior le­gal an­a­lyst for 11 years un­til she took dis­abil­ity re­tire­ment.

“I also have a cer­tifi­cate in hu­man re­source man­age­ment, did short cour­ses in fi­nan­cial mar­kets, pre­sen­ta­tion skills, pro­ject man­age­ment and new man­agers pro­gramme at Wits. I also did a life coach­ing course with the Robert Simic Coach­ing In­sti­tute,” she says.

DIS­COV­ER­ING SHE HAS LU­PUS

Si­bongile says shortly af­ter her birth­day nine years ago, she fell ill as her blood started to clot and a few months later, she con­sulted a doc­tor be­cause she was bat­tling tremen­dous fa­tigue.

“I was told that I was de­pressed,” she says. “I strug­gled breath­ing and was im­me­di­ately put in ICU due to a pul­monary em­bolism - a blood clot that oc­curs in the lungs. With more tests, my doc­tor fi­nally di­ag­nosed me with lu­pus,” she says. Si­bongile says she was shocked, es­pe­cially as she had never heard of lu­pus. “I had to ad­just to the joint pains, fa­tigue and strug­gling to get out of bed ev­ery morn­ing. Ad­just­ing to the new me was a bit of a chal­lenge.”

She says she re­ceived a lot of sup­port from her fam­ily, es­pe­cially her sis­ters and daugh­ters aged 33, 30 and 23.

“They mo­ti­vated me to be stronger and with more knowl­edge, I have learnt to live with lu­pus.”

FAC­ING LIFE AF­TER DI­AG­NO­SIS

With the kind of lu­pus that she has called sys­temic lu­pus ery­the­mato­sus (SLE), Si­bongile says she had to get used to wak­ing up each morn­ing with painful joints.

”I also ended up hav­ing to quit my job be­cause I was not able to re­mem­ber in­for­ma­tion and my job re­quired a lot of read­ing and fo­cus­ing. I then went and opened a beauty sa­lon which was meant to help me fi­nan­cially and keep my mind off the ill­ness,” she says.

As she was com­ing to terms with her con­di­tion, she then dis­cov­ered her cousin was suf­fer­ing the same fate, but only a dif­fer­ent type of lu­pus.

“When you have lu­pus, the soldiers of your body nor­mally fight for­eign ob­jects which en­ter from the out­side, but with lu­pus, the soldiers are fight­ing the body it­self, and not pro­tect­ing it from for­eign in­vaders,” says Si­bongile.

US­ING HER PAIN TO HELP OTH­ERS

Upon the dis­cov­ery that she was liv­ing with lu­pus, Si­bongile de­cided to es­tab­lish the Lu­pus Foun­da­tion South Africa to raise aware­ness and give sup­port to lu­pus suf­fer­ers and their fam­i­lies.

“The foun­da­tion aims to cre­ate a plat­form where doc­tors, nurses and all in­ter­ested par­ties en­gage and look for so­lu­tions to treat and man­age this dis­ease. It has been proven that early de­tec­tion and treat­ment of symp­toms can con­trol flare-ups and pre­vent dam­age to or­gans,” she says.

“The ob­jec­tive of this foun­da­tion is to share and in­vite as many suf­fer­ers and sup­port­ers as pos­si­ble to be­come in­te­grally in­volved in ed­u­cat­ing all af­fected. In South Africa, there is no ex­ten­sive re­search be­ing done on lu­pus. As a re­sult, there is no of­fi­cial record of how many peo­ple suf­fer from the dis­ease. In the US it has been re­ported that one in five women has lu­pus,” she says.

STAY­ING POS­I­TIVE

Si­bongile says the foun­da­tion has helped her sig­nif­i­cantly deal with the psy­cho­log­i­cal ef­fects of lu­pus. “I see my­self be­ing for­tu­nate ev­ery time I talk with fel­low suf­fer­ers; some have the cru­ellest form of the dis­ease, while mine has been le­nient with me. Giv­ing them sup­port has given me courage,” she says adding that she did a coach­ing course to be able to give sup­port and coun­sel­ing.

To keep the foun­da­tion run­ning Si­bongile re­ceives spon­sor­ship from var­i­ous com­pa­nies. “Eskom re­cently hosted a Joy & Jewels Fundrais­ing event as part of their foun­da­tion’s com­mu­nity devel­op­ment ini­tia­tive to raise funds to pro­mote aware­ness of lu­pus and sup­port for those who are af­fected by the dis­ease,” she says.

Si­bongile says peo­ple look at her and won­der what she is talk­ing about when she tells them she has lu­pus be­cause she looks healthy.

“Through my jour­ney I haved learned to ap­pre­ci­ate my bless­ings be­cause the neg­a­tive in our lives can some­times blind us from ap­pre­ci­at­ing the pos­i­tive,” she laughs.

Si­bongile Ko­mati, who was di­ag­nosed with lu­pus, started the Lu­pus Foun­da­tion South Africa to cre­ate aware­ness on the ill­ness and to give sup­port to other lu­pus suf­fer­ers and their fam­i­lies. She re­ceives a cheque from Ce­cil Ra­monotsi of the Eskom Foun­da­tion

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