courtesy by ASCA
After finding out that her daughter was born with Sickle Cell disease, Agnes Nsofwa, a mother of four and a warrior, determined to give her daughter, a second chance. Agnes changed her career from a banker to a nurse. A crusader of Sickle Cell, she founded Australia Sickle Cell Advocacy (ASCA), relentlessly advocating, and raising awareness about this unspoken disease to save lives.
Originally from Zambia, and a mother of four, Agnes Nsofwa landed in Perth in 2004, accompanying her husband who came to study accounting. Upon her husband completing the course, they successfully applied for permanent residency and citizenship. ‘Coming from a very threatening and lonely space, the journey hasn’t been easy’. After giving birth to her fourth child, Agnes knew within herself that there was something wrong with her daughter. Her daughter was diagnosed with sickle cell when she was 14 months. ‘Then I didn’t know what sickle cell was and could not even spell the name correctly’. The day
her mother-in-law arrived in Australia for a visit, was the day her daughter was admitted in hospital. ‘For me, knowledge is power’. I told my mother-in-law that I will study medicine. I need to know what this illness is.’ Her daughter was hospitalised for approximately 6-8 weeks, a very stressful time for the family and a time which brought big changes to her family
Nursing School
‘I got frustrated and lonely as I did not understand. I grieved for almost five years.’
With a business degree, Agnes was comfortably working in a bank at the time. She started reading about sickle cell when her daughter was diagnosed with it. ‘I got frustrated and lonely as I did not understand. I grieved for almost five years.’ Eventually she managed to accept the situation and opened a Facebook page in 2014. ‘Studying to be a doctor with four children would be very demanding and would take too long at that stage of my life’, thought Agnes. To be more realistic, Agnes did a quick manoeuvre and enrolled in nursing at the University of Sydney. ‘I studied sickle cell a lot and took it as a topic for one of my assignments and got a high distinction for it’. Agnes completed her Master’s degree in nursing in 2015.
courtesy by ASCA
Founding Australia Sickle Cell Advocacy Inc (ASCA)
‘People are not even aware that they may carry the sickle cell gene also known as sickle cell trait, most of them only find out after their children are born with sickle cell disease.
The suffering of her daughter was an impetus to founding ASCA. Agnes ‘s daughter went through all types of sickle cell’s management including blood transfusion and in 2019 she underwent a bone marrow transplant. Through Facebook’s interaction, Agnes felt that sickle cell should be an everyday talk and work topic. She believes that it is important to talk to have open discussion regarding sickle cell disease, asking what people lacked, what they need and how are they were affected by the illness. ‘People are not even aware that they carry the sickle cell gene also known as sickle cell trait, most of them only find out after their children are born with sickle cell disease.’ As the number of followers on her face book page kept growing, Agnes founded ASCA which was successfully launched on the 19th of June 2019, the International Day for Sickle Cell, at the Melbourne Royal Children Hospital. ‘I am very appreciative of my husband. He has been instrumental in supporting the project all the way. The hospital has also been so good to us’.
courtesy by ASCA
Some Challenges along the way
‘This is close to my heart, it is my passion, and I won’t give up’
Along the journey, Agnes learnt to be patient and understands she must ‘Never give up’ as rejection is part of the journey. When her daughter was sick in hospital Agnes juggled between motherhood, being a carer and a full-time worker. With her husband working interstate, she had to leave hospital to drop off and pick her other children up from school. ‘Having a sick child, makes it so hard to close your eyes and pretend that sickle cell does not exist’. ASCA has been strongly advocating for the implementation of a mandatory newborn screening for sickle cell disease, to detect if the baby is born with sickle cell. This will make it easy for clinicians to start treating early to avoid complications like what happened to her daughter.
Early intervention would save not only resources but would also prevent patients from attending hospital numerous times due to different complications. This is also a better way to have correct data about carriers of sickle cell. ASCA is also appealing for more research into the illness, the education of clinicians on policy guidelines and for more resources from the government, private sector, and other NGOs. When her daughter was 26 months, she had pneumonia. When they took the fluid out of her lung, some air was trapped inside when they closed that up too soon, she ended up having surgery resulting in taking out part of her lung’. ‘Sickle cell is a manageable disease and people can live with it, but early detection is essential to avoid complications.’ ‘This is close to my heart; it is my passion, and I won’t give up’.
ASCA’s Vision
Agnes and her team have successfully rolled out ASCA into other major Australian States (NSW, QLD, SA, WA) within 3 years of registering ASCA. We are continuously collecting data on sickle cell while shining the light on sickle cell disease.
In addition, Agnes has also been working on an upcoming forum of approximately 30-50 women focusing on women’s health.
Agnes encourages women to be ‘The Voice’ that talks about illnesses and other things that affect women to empower other women and be a role model to young kids. ‘Don’t just complain, do something about it to positively contribute to our Australian society’. Agnes reminds women that changes start with ‘You’. ‘Believe in your dreams and explore how you might do things differently from traditional ways to changing people’s lives. A small step every day would one day make a positive difference in people’s lives.’
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