Helping others through her pain
Sibongile Komati is using her illness to reach out to other sufferers of lupus
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.
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