 |
| ITUMELENG I-TWO SIBILANGA |
Where were you born and how was life growing up?
Born and raised in Motswedi. My Grandmother, Neo Moletsane, raised all her children's children under one roof. Where money was not a big deal at the time but live stock and harvesting from the land was true wealth. On week days, we herderd live stock from the nearby mountain to the kraal which was across from our home. The boys would take care of this and the ladies would be busy helping in the house. We played a little but when we did, we played hard. Saturdays we did chores or we would go to the Bush kraal where over 80 cows were kept because the village chief did not allow cattle to be kept near residential areas for hygiene purposes. We would walk for hours bringing milk home. These were great times as everything was organic.
What made you study Graphic Design?
Initially I never knew what I wanted to study but because my older brother was very observent when I was growing, he suggested it. He remembered when I was in Primary School, I would watch Disney movies and when I got home I would remember the pictures and I would redraw the scenes in my hardcover book.
The Jungle Book and the Lion King were my favourite. I still have the movies and songs today.
When my brother suggested I do Graphic Design, I didn't know much about computers besides typing and scribbling on window paint. Never knew I could draw, let alone design on a PC. When I was told I would be drawing on PC, I got scared and excited, all at the same time. I had no programs and no computer so my brother bought me my first computer so I could practice and do my assignments from home. He even took me in to stay with him until I completed my studies. I had a great time in Pretoria. I passed in record time and got my diploma. 😁
When were you diagnosed with your ailment?
I was diagnosed with Lupus in January 2016 when the doctors saw what we now know as the Butterfly rash across my face. I had been sick since 2014 where my first sign was painful and swollen joints in my right hand with fingertips turning purple. After that I had eye problems where I could only see with one eye and when I visited the doctor he said I had an infection. Even though the drops helped but something new would come up until I got admitted at JST in Rustenburg where the X-ray showed my heart was twice as big and I was given 19 tablets a day for 254 days, but no change until January 2015, where obvious signs were showing on my face. This was the beginning of a new chapter of chronic pain and many complications with new chronic illness activated by Lupus as my organs where being attacked at a slow rate. However, I am learning to manage the desease with chronic meds and healthier lifestyle.
What is LUPUS?
It is an autoimmune diseases where the immune system attacks healthy tissue. So the immune system becomes hyper active, because of so much activity it gets confused and sees good and bad cells as all bad and attacks. There is no known cause but it is hereditary. In my case I suspect it comes from my father's side of the family as my father passed 2009 of complications to his health. This is something I have to further investigate.
What is your Non-Profit Organisation (NPO) called?
The Lupus Drive
Why did you decide on starting this foundation?
When I was diagnosed there was no one I could get help from because I was made to believe that it is so rare chances are I am the only one with the disease in the country. So much about the number of patients is not known, but it continues to take lives. This is part of the mission of The Lupus Drive. I contacted the known foundations in SA but no feedback or help from them. In 2016 I started posting about my struggles with Lupus because I wanted to leave a memoir incase I die of unknown causes. So Pontso Moiloa who is a friend from High School contacted me and started asking questions about my struggle and that is when she saw the need to raise awareness about Lupus. We had our launch on 25 November 2016 where we relied on personal and public funding. It was not an easy journey but we had a goal in mind and today we can see the results thereof.
How many people are involved towards creating awareness and in proving support to your foundation?
We are a team of 3 where Pontso is the founder, I am the director and Nompumelelo Simango (Operations). We bring our individual skills to the team, this has proven very effective as we have managed to stay relevant for so many months with over 100 people living with Lupus as members of the drive and many coming up. Some have had Lupus for 20+ years and have met one or two but because of our whatsapp support group they can interact with fellow warriors from all over SA. In our Whatsapp group we have warriors giving each other comfort as well advise on how to go about managing the disease and type of medication to take if new problem arises. This kind of support has proven useful as members are now quick to respond to new illments and get help sooner. See our page for more detailed activity.
What impact does living with Lupus have on you personally, and your family?
Even though the early stages were tough but it has brought us closer than before. Everyone has been 100% supportive including my uncle back in Motswedi village. I now understand and know love through my friends and family. Even now that I am managing this disease everyone still checks and visits me.
I have learnt to look forward to just having a good day and any bad news from the doctors has taught me to work harder in life. The Love of my life Tshepiso Rantho has been with me since my first day of illness, where she also helped take care of me by feeding me and bathing me when I couldn't. My daughter Aganang was not even a year old but she would climb up the bed and kiss my sore joints and say 'Solly papa' (baby talk). This gave me strength to get better and my family made sure I had whatever I needed to get well. I was never alone my friends were there too. I am so lucky and grateful to have such unconditional love.
How can people help fund your NPO?
People can make a generous donation of any amount to our account number. We can do with every bit sent through as we are limited as we depend on personal funds to do activations and awareness all over the country. We use these funds for merchandise and get to and from interviews and activations nationally. We also have shirts available at R150 each.
We are currently raising funds for the Evening Of Hope in 28 September 2018 where these funds can help us accomplish this goal to cater to Lupies for the night. We are in talks with Government to proclaim May National Lupus Month and 10th May world Lupus Day, where we will see All South Africans wear purple or wear a purple ribbon to stand in solidarity with all warriors and their families across the country and worldwide.
The Lupus Drive
Fnb
62730233814
Social media handles.
FB The Lupus Drive
IG: the Lupus Drive
Twitter : drivelupus
Contact Itumeleng +2784 418 3443 and Pontso +27608295154
Sponsorship request/proposal is available for anyone who wishes to see a more detailed view of our objectives with The Lupus Drive.
In addition, the South African Government has known about Lupus since 1981. Some of the medication is harmful like Prednisone which eats away at your bones. Thus the government needs alternative and effective medication. This is what The Lupus Drive wishes to achieve also.
WORD TO THE LUPUS REVOLUTION
No comments:
Post a Comment