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| Suwilanji Chella |
THERE is no shortage of stigma, myths and misconceptions when it comes to certain diseases and sickle cell is one of them.
Suwilanji Hope Chella, the founder of Hope Sickle Cell Anemia Foundation (HSAF) can attest to this.
The disease is so-named because abnormal haemoglobin, the protein that transports oxygen in the blood causes the red blood cells to become rigid, sticky and shaped like sickles.
Suwilanji, 23 takes folic acid pills and blood supplements everyday all because she has to keep her blood cells in shape.
She has been living with sickle cell for 23 years now. Sickle cell disease, a genetic blood disorder, is most common among Africans.
The worst stigma in her life as a sickle cell warrior was when a man she was dating introduced her to his family for a possible marriage partner and the man’s family rejected Suwilanji on grounds that sickle cell patients have a short life span.
When dating with sickle cell, Suwilanji says many warriors are stuck in a dilemma whether to disclose this chronic medical condition or keep the secret as best as they can.
But for her, she decided to be open with her condition and it cost her.
“There is a lot of stigma, myths and misconceptions surrounding sickle cell and I have experienced lots of it. I was in the process of being introduced to a family as a wife-to-be to a certain guy and his mother rejected me on grounds that I was a sickle cell patient and that is how the relationship ended,” she says.
Suwilanji, a freelance journalist and a Radio presenter at the United Voice Radio says the rejection she suffered when the family of the man she thought would marry her, was the worst.
“I just had to be truthful and this dramatically affected our relationship. My fiancé’s family could not take it and he opted to respect the decision from his mother, scaring him with horror stories of the ‘sicklers’ and he gave up on our relationship,” Suwilanji says.
But despite all the agony she went through in 2015, Suwilanji managed to pick up the broken pieces and this gave her courage to come up with her organisation aimed at creating awareness around the disease.
Suwilanji says she does not regret her action, “If I did not disclose, then the burden of hiding the condition would have been on me. So despite what happened, I am glad I did not hide my condition.”
Marriage is a big deal and Suwilanji says the set-back made her stronger and also led to the birth of her organisation, HSAF.
“Marriage is a huge deal when you have sickle cell, you always have society look at you like you will die anytime. Sometimes, you meet someone who wishes to marry and you will find that his family has a say on the decision. It is really difficult. But I am glad I met a man who has accepted me the way I am,” he said.
“There is lots of stigma and worse off for women like me, every woman hopes to one day have a family and get married,” she says.
Although Suwilanji bears no grudges against anyone for her predicament, she insists that stigmatisation among the people with certain conditions should be discouraged at all costs.
“The pain I used to go through every day was unbearable but now that I have grown, I know how to take care of myself and I take medication daily and I keep myself warm all the time,”
Suwilanji says it is unfair for grudges against anyone for her predicament, she insists that stigmatisation among the people with certain conditions should be discouraged at all costs.
“The pain I used to go through every day was unbearable but now that I have grown, I know how to take care of myself and I take medication daily and I keep myself warm all the time,”
Suwilanji says it is unfair for people to stigmatized sicklers.
Despite a rise in cases of sickle cell in the country, there are no statistics regarding the disease.
This is another reason Suwilanji founded the organisation.
Suwilanji says she founded HSAF in February 2017 because she felt that there is no proper information regarding the disease.
“The disease is on the rise in Zambia and hundreds of children are being born especially in rural areas with no information on how to manage the condition,” she says.
Suwilanji says, currently the country has no data on how ,many sickle cell patients there are.
“There is a lot that has to be done in order to serve our lives and create awareness. Currently, there is no data on the number of Sickle cell patients and there is only one sickle cell clinic at the University Teaching Hospital servicing the whole country.”
“This means that any sickle cell patient from any part of the country has to travel to Lusaka for treatment and the facility is overcrowded, too small to accommodate everyone,” Suwilanji says.
Suwilanji says sickle cell patients are anaemic, vulnerable to infections and experience episodes of pain known as sickle cell crises, especially when still young.
Schooling too, according to Suwilanji becomes difficult in such circumstances because they are made to endure same punishment just like an average human being.
“We are punished like the rest, made to weed like the rest with no exceptions. But the health sector is equally worse, we get to the hospital and we are made to join the queue like everyone else. They forget that our time ticks faster than the ordinary person. We need that urgent attention and society does not understand including medical staff,” she says.
Born in a family of six on February 23, 1994, Suwilanji has a twin brother who is a carrier of sickle cells.
“I come from a family of 6, we are now five, the eldest, a male, died of sickle cell five years ago when I was 18. My twin brother is a carrier, he is not a patient. I have two brothers who are twins and they are both carriers. I have an elder sister who is not carrier or warrior. She is free from both. I took after my late brother. By the way, my late dad was a carrier and my mum is a carrier. My dad died when I was below 2,” Suwilanji says.
She did her primary school at Woodlands A from grade one to seven and for her Grade 8-9 she went to Kabulonga Basic School. For her Grade 10-12, she went to Kabulonga Girls Secondary and completed in 2011.
“I grew up knowing that I had sickle cell, and it has not been easy for me being a sickle cell patient. There is a lot of stigma and I remember whenever I miss school, teachers and my fellow pupils used to discriminate against me,” she says.
The most serious attack was in 2011, when she was in hospital for over three months and wrote her grade 12 examinations in hospital at UTH.
Suwilanji gives God the honor and her mother for the obvious emotional and financial stress that her single mother and family went through in bringing her up.
Suwilanji has one promise, never to give up despite the stigma, adding that she will fight the stigma, the reason she set up a not-for-profit organization to create awareness about sickle cell.
PUBLISHED IN THE ZAMBIA DAILY MAIL ON JUNE 25, 2017. LINK: https://www.daily-mail.co.zm/suwilanji-living-beyond-sickle-cell/
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