First lady tackles diabetes

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A doting mother, global activist, philanthropist, leader and game-changer in the diabetes space, Bongi Ngema-Zuma is many things to many people. In her role essentially as the first lady of South Africa, a generally accepted title for the wife of the president, her main duty can be summed up as one thing; “taking care of the president so that he can best serve the people”, as the former US first lady Jackie Kennedy would say.

But for those who work closely with her in her role as social activist and policy advocate for diabetes through the Bongi Ngema-Zuma Foundation, she’s simply Madam Ngema-Zuma, a title she seems to be at ease with.

In concert with her role as one of the hostesses of the head of state, she actively participates in a number of programmes that support presidential community development objectives, especially in the area of primary healthcare. This role sees her engage with stakeholders on issues that are of importance to her, the president and the people of South Africa.

Madam Ngema-Zuma has been working tirelessly to raise awareness of diabetes and other non-communicable diseases since the launch of her foundation in 2010. It is her passion to ensure that no one suffers or dies because “they are unaware of the fact that they have diabetes or because they are not receiving appropriate treatment required to manage the condition”, she says.

Looking back over the past five years of the foundation’s existence, it’s clear that Madam Ngema-Zuma has made measurable strides in spreading awareness about diabetes and emphasising that it is a manageable disease and as it turns out she’s more than happy with the progress the foundation has made so far. “Like any other growing organisation you have a vision and you speed things up to get to reaching the goal,” she said.

“As you can see, ours is not really a goal you can see and touch but we want to see strides towards realising it and I think we have made significant inroads in the fight against diabetes, we have broken the silence especially within the community space as you recall our audience is primarily people from the rural areas.”

Madam Ngema-Zuma has been deeply humbled by the responsibility and trust placed in her and the outpouring of support from the health fraternity at large.

“If you look even within the health fraternity, we have been able to convince many people who have now bought into our strategy and are continually wanting to partner with us. Many of our supporters come from where we had never thought possible in our fight against diabetes, who are saying hey we can work with you here, come let’s hold hands together and change lives.”

For the proud mother of one, it is one thing to be able to influence decision makers within the corporate space and quite another to make a “tangible difference” in the lives of ordinary people.

“In my own observation before I started the foundation, I had not heard anyone talk about diabetes. Even when I started going around asking ‘does anyone know if there’s World Diabetes Day and when is it being observed’, I could not get an answer.

“When I asked people about the global symbol for diabetes even people within the health fraternity did not know it. So these are some of the things that I can say freely now that many people know today and are exposed to as we are able to raise awareness around them.”

“I remember even the prospect of getting someone to interview us on air, it was a bit of a challenge with them saying ‘what are we going to say about diabetes’ but now we have many people following us wanting to know what is knew, what can you tell us about diabetes and for us that is humbling.”

According to the International Diabetes Federation, there are about 2 million people with diabetes in South Africa and while some sources estimate that number to be even higher, the Ngema-Zuma Foundation envisages a South Africa where diabetes ceases to be a killer due to lack of awareness. In order to achieve this and speed up progress, Madam Ngema-Zuma knows it is important to forge collaborations with other local and international bodies that understand and are better equipped to respond to a myriad of challenges involved in managing the epidemic.

“The reception from international organisations has been quite overwhelming.

Just recently in 2014 when we were planning for the World Diabetes Day which were hosting in Tsakane, we were approached by UNAids whose main framework was more focused on tuberculosis (TB). They came with a strong purpose to talk about the interlink between TB and diabetes and they wanted a partnership with us.

“The talks have started and they are sending the message that anyone with diabetes should also be screened for TB and we identified mutual benefits to form a partnership.

“We get a lot of other similar invitations. If you look at the International Diabetes Federation for example, I got an invitation from them to be a keynote speaker at the Parliamentary Champions For Diabetes, the biggest platform that anyone can speak on or even attend because that’s where all ministers of health from around the world gathered. And at the last one recently in Vancouver I received a star award which says a lot about how the world views us.”

Last year alone the foundation received a special recognition from KwaZulu-Natal MEC Sibongiseni Maxwell Dhlomo for service excellence for the work they are doing with the different arms of the department of health. “We are also planning to partner with the national Department of Health for World Health Day on April 7. The department has targeted diabetes to be the flagship for this year’s celebration and they have asked the foundation to partner with it. You know those are the things that are humbling which say we have done something in the right direction.”

In 2015 the Ngema-Zuma Foundation was honoured by reverend Jesse Jackson’s Rainbow Push Coalition with the International Humanitarian Award.

Just months earlier Madam Ngema-Zuma was awarded an honorary doctorate of humane letters from Shaw University in the US for her service and contribution to healthcare in South Africa. One of the oldest historically black academic institutions in southern US, following the recognition, the first lady – described by Shaw University as a “healthcare trailblazer and global leader” – was invited to deliver a commencement speech to more than 300 university graduates.

Nothing is in vain, she says. “It’s testimony to what we are doing and that people are taking note. Also what gives us more glory is when we come across a person who says ‘I did know I was diabetic, but after I attended your event I am now on medication’.

“For us its those kinds of things that we want to hear because even if we were in existence for just that one person and save a life, we would have done it.”

While she maintains there are still giant challenges to be met, one can not help but fall in love with her unshakable commitment and passion for diabetes awareness, which is evident as she speaks about the work that lies ahead for the foundation.

Her passion for diabetes advocacy stems from having lived with people who suffered from diabetes.

“My mother and aunt lived with diabetes. My mother who lived with diabetes for 20 years refused to let the illness take over her life.

“Even though she was blind for some time and had to undergo two cataract surgeries due to diabetes complications, she used to say ‘One thing I know for sure is that I would not die and leave my kids because of diabetes’.”

She would say “diabetes stay there, I am going nowhere”, she says.

Her mother lived a normal life and did everything her doctor instructed her to do until she passed away at 68 in 1997. “She’s my greatest inspiration even to this day. She used to say to me ‘if you can’t make yourself happy don’t blame me, you are responsible for your own happiness’.

A girl’s girl who has kept many of the friends she’s made since childhood, one of the powerful mantras she lives by is “don’t ever leave without saying goodbye,” a lesson instilled in by her late grandmother. “In order to have closure from the past, you have to back to the person you have something hanging, otherwise you’ll find difficulty moving on. The worst thing is you may never have another opportunity to say a proper ‘goodbye’ and find peace. That’s what she taught me.”

Tankiso Komane

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