Pastor battles rare skin ailment
Labeled an AIDS patient by nurses and members of the public, he recalls that a nurse once humiliated him by supposedly revealing his ‘gonorrhea status’.
He was on the brink of committing suicide.
All this happened because nobody understood Simeon Simon Valimo Kandjala’s rare skin condition that has now been diagnosed as a case of Psoriasis.
Despite all the ridicule and humiliation Kandjala managed to go back to high school as an adult and later acquired a diploma in theology and a degree from the United Lutheran Theological Seminary Paulinum and from the Namibia Evangelical Theological seminary (NETS), respectively.
Today he works as a chaplain in the Namibian Defense Force (NDF), where is employed as Lutheran pastor.
He has also since become a family man with wife and children, whom he says are very supportive.
In 2010 Pastor Kandjala wrote a book, titled ‘The war between life and death’, which aims to sensitise the public to the disease Psoriasis, based on his personal life experience.
“In the book] I tell everything that happened to me. I tell the entire difficulties that I went thought. I speak about my experience with depression.
“I speak of how I think God allows some of us to experience [difficulties] in our lives and how we can have hope,” said Kandjala.
He now hopes to launch the book on the same day that he plans to launch a new association for people living with Psoriasis.
He however needs help to cover the printing costs.
Kandjala says after doing some research he found that the cheapest local printing firm quoted him N$64 000 for 1 000 copies and N$217 000 for 5 000 copies.
There are also other options for 1 500 copies and 2 000 copies.
Through his organisation, he wants government to make funds available for the treatment of people suffering from Psoriasis, because the treatment is currently too expensive for most affected individuals to afford.
The skin condition is chronic and affected people have to use special ointments for their whole lives to suppress and control the symptoms, although the ideal treatment is a monthly or three-monthly injection that costs at least N$14 000 at a time.
Recalling his battle with this uncommon disease, Kandjala said he once woke up in the middle of the night itching profusely.
This was two years after he had crossed the Namibian border into Angola to join the liberation struggle in exile.
A month later he was sent to the clinic at Tobias Hainyeko Training Centre in Angola.
“So the days came and went and I was just itching without resting. Then I started developing rashes on my stomach and on my chest.
“In November 1987 I was deployed to the front… I did not tell my comrades [about my condition], because I thought that if I tell them they might think that I am afraid to go to the battlefield.
“But there was war in my heart. I was crying inside. I told myself that it will be better for me to die in battle than to die from this horrific disease,” he explained.
Although he was fortunate to survive the ravages of war and return home to Namibia at the time of the country’s independence, his condition did not improve markedly.
The insults he faced on a daily basis made life almost unbearable.
“One day a nurse started shouting at me at the hospital that we returnees brought AIDS to the country. On several occasion doctors sent me for HIV tests, but I never collected my test results out of fear.
“Instead I kept changing clinics and hospitals and tearing some pages from my medical passport and this went on for years,” he explained, until 1996 when a relative convinced him to go for an HIV test, so as to know his HIV status.
Although the test confirmed that he was not HIV positive, Kandjala’s condition did not get any better, as the diagnosis and treatment of his condition remained a mystery to local doctors. His dilemma started triggering suicidal thoughts.
“Sometimes I felt that 2008 was my last year to be alive. I used to pray so hard, asking God what I have done,” he said.
Surprisingly, 2008 was the year a ray of light shone on him, as his NDF commander helped him to get treatment in Cuba. Although he now depends on a regular injection, that costs N$14 000 every two or three months, Kandjala’s condition has since improved drastically.