Milase has not had an easy life, however she has not let her illness get her down, and after a kidney transplant, is finally living a healthy life. She shared her story with us.
“My teenage years were a mix bag of fortunes. I was raised by mother’s sister from the age of 8 years old to instil my Xhosa culture which my father, despite having moved and settled in Durban, still held steadfastly to the language of his ancestors. I was born the only girl among 4 boys.
I was in the Top 4 at high school and the reason I’m mentioning this is because each year the school would select the top 4 and put them on a University program. They would assist us with applying for enrolment, bursaries etc. My future was set. In my final year, I started to get sick. I had flu like symptoms but with severe headaches, body aches, rigors etc.
The nearest hospital was a village hospital in Bizana, called Greenville, some 25 kilometres away from the school. It was July and we had started our preparations for Matric exams. I was admitted at this village hospital and they diagnosed me with pneumonia and the medication that they gave me every four hours made me worse. They had to call my mother from Durban. My mother was a midwife at those half hospitals in the townships that the apartheid government called Poly clinics.
They were just enough to treat the local community for stab wounds and deliver babies but had no surgical or specialist’s treatment. She was just a nurse, yet she took one look at me and my chart and told them that I don’t have pneumonia. “I don’t know what my child has but she definitely does not have pneumonia. I’m not leaving here without my daughter so please bring a Refuse Hospital Treatment (RHT) form and I’ll take my child away” she shouted. This spectacular scene would save my life.
We drove through the night on a hired VW Beetle with my mother and my step-dad. Eventually it broke down on the highway just before dawn as we were approaching Port Shepstone, some 200 km’s away from Kind Edward Hospital in Durban. We were stranded by the side of the road for hours. I remember it being very cold but eventually we were rescued and taken to hospital.
I was diagnosed with Systemic Lupus Erythematosus (SLE) within a week at King Edward Hospital. This was one of the premium teaching hospitals in the country then. I doubt that you would use premium to describe it today. It was 1985 and they placed Lupus within the Rheumatoid Arthritis clinic as it presented itself with arthritis symptoms at the time.
It was towards the end of my teenage years and on my final year. I had now been at the hospital for two and half months. I was starting to get agitated as the final exams were fast approaching. I went back to school just as they were preparing our “MATRIC BALL” which was a warm ceremony as it doubled up as a welcoming party for me.
I wrote and passed my exams but did not get an exemption as expected. This would be the second derailment in my life. I accepted that for now I must focus on this Lupus thing. My mother was told I had 5 years to live so she was treating me like that.
I was now at home and so I decided to do something with my life and entered Beauty Competitions as a source of income. I had some sort of reputation and won quite a few of the local beauty competitions until I won the big one Miss Durban (black version) in 1989. I was supposed to go and represent my region/province in the finals in Johannesburg a month later when Lupus struck again. By the time I got to Johannesburg, I had skin lesions all over my arm and legs. We used to call Lupus a cruel disease at home, because it chose the part that could not be hidden by a swimsuit which is always a crucial part of the beauty competition.
During week leading to the competition, I would hide behind long sleeve tops and pants when all the girls were wearing the tinniest of items to show off their natural beauty. I remember that week as the worst in my life and I wanted it over, but I needed to do it as I would have to forfeit my prize money of R1,000.00, a million rand equivalent those day. When the competition was over, I couldn’t wait to get home and hide.
Those skin lesions would stay with me for the next 4 years. During this time HIV had broken out in the states and stories were being whispered in the township that I could possibly have the virus. This was late 1989 and no one knew anything much about HIV in this country. All people knew was that I had spent a stint overseas and now I have these skin lesions on my body and the butterfly rash on my face. I had my first child on my 1st year in 1991, seeing that I was not dying as promised. It would be another four years before I relapsed. I then developed Lupus nephritis in 1994. I stayed another month in hospital and the doctors were now convinced my time as predicted had come. I had water in my lungs and had to be drained every day and my kidneys collapsed and had to have dialysis immediately. After a month on dialysis, my kidneys started to work again. This would be my worst Lupus attack I had experienced.
I was discharged and went back to work. I would have a few relapses coupled with sessions of cyclophosphamide until I fell pregnant again. This time I was married and living in Johannesburg and had a very difficult pregnancy. I was older (35), and the Lupus had grown to affect my kidneys slightly. Despite all the results pointing towards all negative outcomes, I gave birth to a healthy baby boy.
In 2011, it was confirmed that I had little renal function left and I started the process of preparing for dialysis like having a fistula put on my arm.
After 5 years on dialysis, I was fortunate to get a kidney transplant in 2017 and I am living a new life with my gift.
“I can’t believe how my new kidney has completely changed my life. I feel like my entire life has been restored, and that I’m alive for the first time in 30 years”.