Suwilanji: Living beyond sickle cell

Suwilanji Chella

DOREEN NAWA, Lusaka.
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/

Holding out for hope

ANTONY with his mother.

DOREEN NAWA, Lusaka
MIGRAINES are something that never ran in the family of Antony Chiwone, a 21-year-old first year student in the School of Natural Sciences at the University of Zambia (UNZA). Neither his late father nor mother ever had them.
But Antony has had migraines and swollen face for some time now. He had migraines on and off since he was in high school in Lusaka’s Chunga area.
However, they were more frequent around mid-January this year; he could not sleep, was often thirsty, had blurry vision and was fighting chronic fatigue.
One morning in February, as he was in class at UNZA, he got sick and was taken to the University clinic, where he was diagnosed with high blood pressure and told to rest for a few hours with the hope that the pressure will normalise.
But after waiting for over six hours, the blood pressure could not normalise, and so, he was referred to the University Teaching Hospital (UTH) for specialised diagnosis.
At UTH, Antony learned that he had end-stage renal failure, which is a total shutdown of his kidneys. His blood pressure was so high such that doctors were surprised that he had not had a stroke.
He was admitted in hospital for one month before doctors at UTH recommended in March that he be taken for a kidney transplant in India.
The donor is there; his mother.
But there is a challenge still.
His mother, Grace Chiwone, cannot afford the costs attached to the kidney transplant. So, Antony is seeking for US$30,000 to undergo a kidney transplant as quickly as possible in India.
At 21, this is still a young life, one that is seeking to become a medical doctor so that it could help in saving lives.
Unfortunately, all he has is hope, just hope, that someone can come forward and assist him.
Currently, Antony is undergoing three to four hours of dialysis three times a week at UTH. The dialysis machine filters blood to remove excess water and waste products from the kidney.
“I really didn’t understand,” is his initial reaction of his condition. “I didn’t know anything about kidney disease. [It] just never even entered into my mind.”
Antony is the only child, and as any mother in that position would do, she is willing to do anything to enable her son have a chance at life. So, she is willing to donate a kidney.
“I lost my father in 2001, when I was five, so since then, all the needs have been provided for by my mother. It has not been easy and now it is worse because I need transport from here (Kabanana Extension area in Lusaka) to UTH three times a week. I have been restricted on what to eat and not what to and this has become more expensive for my mother,” he says.
“I now visit UTH three times a week for weekly sessions on their haemodialysis machine. I am glad that the cost which I am told ranges between K1,800 to K2,500 per session is being done on me free of charge.”
Antony uses a public bus to move from Kabanana Extension to UTH while his mother follows him on foot to the hospital and back.
“It costs K30 for transport each day I go to UTH, I use the public buses and my mother follows me later because she has to walk from Kabanana to UTH and back. So, if the two of us were to use the bus, the cost each day comes to K60 which is too expensive for my mother to afford,” he says.
Things are certainly dire for Antony and the mother.
His school requirements are met by well-wishers while he lives with his mother in an incomplete house as caretakers of the property belonging to a good Samaritan.
Antony’s sickness has only compounded matters for her mother.
“Being a single parent hasn’t been easy, but neighbours and friends have been very helpful in ensuring that my son and I keep up,” Antony’s mother says.
Diabetes and high blood pressure are among two leading causes of kidney diseases in the country, and they are on the increase.
The financial costs involved in kidney treatment are staggering; for instance, for each kidney transplant to India, one has to part away with US$30,000, an amount that is beyond the majority of Zambians in the position such as Antony’s.
“[Kidney failure] is absolutely increasing because of hypertension and diabetes. It’s a very serious disease. It’s on the rise, and many patients cannot afford the transplant costs because it is done outside the country. Currently, it costs between US$25,000 to US$30,000 is,” says Dr Michael Mbambiko, a United Kingdom-trained kidney transplant surgeon.
Dr Mbambiko says kidney disease is called the silent killer because the patient often does not notice any symptoms until the disease has done severe damage.
“Early detection is the key. If people have a history of diabetes or high blood pressure, they should get tested for kidney disease once a year,” he says.
And Ministry of Health spokesperson Kennedy Malama says Antony’s problem is being looked at by the ministry.
Currently, Zambia has no capacity to conduct a successful kidney transplant because such an operation requires the necessary equipment and supporting staff like nurses trained to handle kidney transplant operations.
That is why Anthony’s case is urgent.

PUBLISHED IN THE ZAMBIA DAILY MAIL ON JUNE 24, 2017: LINK: https://www.daily-mail.co.zm/holding-out-for-hope/

Challenges of parenting children with disabilities

DOREEN NAWA, Lusaka
NO-ONE would claim that parenting is easy, but when one has a child with a disability, there is a whole new level of challenges involved.
There are different issues with special needs children depending on the kind of disability and their age, but mobility is a common challenge among the disabled people.
It is in fact more of a challenge in children because they still have to find out how to get from one place to another and this makes raising children with disabilities to have more enormous challenges.
Due to the levels of poverty, most families of disabled children and adults countrywide cannot afford to buy mobility aids designed to make day-to-day life a little bit easier. 
This renders disabled people to be prone to being isolated and miss out on opportunities their able-bodied counterparts may enjoy.
Julian Sakala of Lusaka’s Kamanga township says having a disabled child has changed her life completely.
Ms Sakala has an eight year old daughter with cerebral palsy. When her daughter was born with the disability, medical staff at Chelston Clinic told her to put everything in God’s hands and put her in a home for children to be cared for, have another kid and move on.
She further adds that she was also told that there was nothing that would really add value to her life if she opted to keep the daughter herself. And it was through her frustration and anger that Ms Sakala decided to prove the medical staff wrong.
Using her sculpting skills, she started designing mobility equipment and supports. And one day during the usual visits to University Teaching Hospital (UTH), she came across a newsletter with information about a company called Appropriate Paper-based Technology (APTERS) that manufacturers everything from wheelchairs to posture supports, which can be easily assembled, fitted and maintained by local therapists and technicians.
APTERS, a Lusaka-based organisation set up in 1990, uses paper-based technology techniques to make mobility aids for disabled people and on average it produces more than 675 mobility aids a year.
APTERS is run by a group of physically, challenged entrepreneurs who are working to provide a service for people with disabilities and their families in Zambia.
APTERS founder and director Kenneth Habaalu says his organisation is designed to benefit children with cerebral palsy by using all sorts of paper to manufacture equipment that helps rehabilitate children.
The equipment made using papers ranges from standing frames, walkers and special chairs and is provided at a minimum fee or free of charge depending on the economic status of the family acquiring it.
“When APTERS was formed, I didn’t know it could have such impact to the many children in the country. The majority of the children are assessed in Clinic 2 at UTH and doctors then make a request in accordance with the child’s needs. The need for mobility aids is enormous.
“When the organisation started, we were finding it difficult to identify children with disabilities in the community. People didn’t want others to know they had a disabled child at home,” he explains.
Mr Habaalu remembers a mother who told him that she would usually leave her child in bed when she goes to the market.
“To help her daughter sit, she told me, ‘I dig a hole outside the house and put the child in there’. To stand, she would tie the child to the tree with material. I think it is inhuman to do such things,” Mr Habaalu says.
With limited resources, APTERS’ team of eight, uses recycled paper and cardboard to make papier maché chairs, standing frames and walking aids, as well as teaching blocks for physiotherapy.
People world over have been finding new solutions and approaches to improve the quality of life for disabled people.
Fighting for disability rights in Zambia is a huge task but some people are taking it upon themselves to make a positive change.
Disability, HIV/AIDS human rights activist, Elijah Ngwale says parenting a disabled child usually involves a great deal of patience and can be very time-consuming.
Mr Ngwale, who is visually-impaired says it is important to resist the temptation to do everything for a disabled child by allowing them to have some level of independence to increase their self-esteem as well as lighten parental load.
He acknowledges the growing trend among parents with disabled children to hide or abandon the disabled children.
“It is saddening that some parents have a tendency of using special schools as dumping sites for their children with disabilities. It is common for parents of a special needs child to feel guilty if there are other children in the family as they tend to receive less attention. Children generally learn to adapt to the needs of the special situation they are in,” Mr Ngwale says.
From his experience, Mr Ngwale says disabled children generally become very nurturing, caring adults.
“Often, couple relationships suffer when there is a child with a disability in the family. Discovering a child’s special needs is often a confusing and painful process for parent,” Mr Ngwale adds.
It is normal for parents to want to blame somebody - anybody - and to bargain in the sense of thinking that changing neighbourhoods, schools, or doctors might make the problems go away.
Grieving for what might have been follows, and finally parents can come to accept the child’s strengths and weaknesses and try to figure out a helpful plan of action.
PUBLISHED IN THE ZAMBIA DAILY MAIL ON JUNE 4, 201. LINK: https://www.daily-mail.co.zm/challenges-of-parenting-children-with-disabilities/

Habaalu overcomes disability

DOREEN NAWA, Lusaka  
WHEN he was five, Kenneth Habaalu was paralysed by polio. Now 53 years old, has turned his own misfortune into an occupation to help disabled children.
Mr Habaalu heads an organisation called Appropriate Paper Technology (APTERS) as executive director. The organisation manufactures mobility aid devices for physically-challenged children.
His story of survival is encouraging to anyone beset with difficulty.
“The early part was very, very scary because I just got sick and suddenly, I was unable to walk, but I am glad I survived. I had polio between 1969 and 1970 and I was unable to walk,” he said.
He recalls playing football in the village, just like any other boy. But when the polio set in, his parents could not find treatment for him.
“Just after my body got paralysed, my parents tried to look for treatment but nothing. The only available remedy then was warm water which my mother used to massage me as a form of physiotherapy,” he says.
Because of his disability, his school attendance was affected; he was on-and-off school.
“I stayed for four years without attending school because of my disability as mobility was a big problem,” Mr Habaalu recalls.
Born in 1964 in Choma district in Hamutebe village in Southern Province, Mr Habaalu started school in Muzoka at Nachibanga Primary School in 1971 and relocated to Muzoka where he lived with his older sister.
Just as he was about to get used to the school environment, his sister relocated and so Mr Habaalu returned to his parents in the village and abandoned school for close to five years.
“During this period, my mother tried to teach me how to cycle a bicycle and I learnt. It was at this point that I again started going to school,” he says.
Mr Habaalu stayed for over five years in the village cycling a distance of 22 kilometers every day to school, which was 11 kilometers away from the village.
The struggle for his consistence in school attendance continued.
“I changed schools time and time again. In 1976 when I went to stay with my brother who was a journalist working for the then Zambia Information Services in Monze, he too had to further his education and went to now Mulungushi University and again, I had to stop school and went back to Monze Primary in the village to continue with school.
“I had several hiccups and in 1982, my brother completed his course and picked me to continue school in Grade 7 at Kansenji Primary in Kafue. He was transferred to Kabwe and we moved again and went to Mkushi for my grade nine to 12 where I complicated secondary education in 1988,”  he says.
After the demise of his brother in Kabwe, Mr Habaalu relocated to Lusaka in 1989 and enrolled at Mindolo Ecumenical for a certificate in business management.
Two years later, he underwent an operation at the University Teaching Hospital (UTH) to reposition one of his feet and at that time, he lived with another older brother in Kamwala in Lusaka. 
And one day his brother took him a copy of the Zambia Daily Mail since he was confined and he used to bring lots of reading materials.
It was in that newspaper where Mr Habaalu found a job advertisement on voluntary basis and when he approached the advertiser, he was considered.
“My parents taught me to have self-respect, and God taught me to believe I could do anything I dreamt of. So, instead of letting polio break me or kill me, I fought it hard. The more it would knock me down, the angrier I would get. That anger, I have often said, is what kept me alive,” he says.
Mr Habaalu, who is married to Maureen and a father of three boys, says living with a disability is not easy.
“I remember even when I wanted to marry, there was so much opposition from all,” he says
To make matters worse, it was hard for him to find work.
“When applying for jobs, I never had any success. I managed with only the ones that clearly stated that they needed a person with a disability,” he says.
His work at APTERS involves measuring children with cerebral palsy and making various mobility aids for them.
“The people that come to APTERS are mainly the vulnerable and despite us making the mobility aids under very difficult financial circumstances, we give them out for free because most parents cannot afford even their transport to go back to their places,” Mr Habaalu says.
Despite his health set-backs, and the need to work fewer hours, Mr Habaalu continues to work and loves his job.
“I like to feel useful and I like helping people it gives me such a feeling of worth.
APTERS was started in late 1990 by a physiotherapist, Archie Hinchcliff whose husband, Peter Hinchcliff was at the time British High Commissioner to Zambia.  When she left Zambia, Archie left Mr Habaalu in charge of APTERS.
For him, it’s a story that he will live to tell the rest of his life.
“Nothing beats personal experience. People with disability face numerous challenges and the struggle is real,” he says.
He says his experience has taught him that while it is common for individuals to experience frustration or discouragement with the loss of physical function, unresolved memories from the original polio experience may amplify the intensity of emotional responses.
APTERS is an organisation based in Lusaka, Zambia. It was set up in 1990 to produce mobility aids with recycled paper and cardboard to assist physically challenged children while empowering physically challenged adults.
PUBLISHED IN THE ZAMBIA DAILY MAIL ON JUNE 4, 2017