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14 September 2021 | Story Dr Jan du Plessis and Dr Mampoi Jonas

Opinion article by Dr Jan du Plessis, Head of the Paediatric Oncology Unit, and Dr Mampoi Jonas, senior lecturer in the Paediatric Oncology, University of the Free State 


For many years childhood cancer has remained a taboo subject in our communities, mainly because too little was or is known about it. Many have known or come across an adult with cancer but for a child to be diagnosed with cancer is totally unheard of. No parent wants to hear the news that their ‘heartbeat in human form’ has fallen ill. One moment they are OK, the next, waves of emotions flood the parents. Mixed in all this are feelings of guilt, anxiety, uncertainty, constant wondering if they could have done anything differently. Most importantly the question, often unuttered remains “Is my child dying/ how much time do I have”.

Most young cancer patients live in developing countries

Childhood cancer is rare and involves only 1% of all cancers. It is reported that globally approximately 70% of all childhood cancer cases occur in low- and middle-income countries. If diagnosed early, approximately 70-80% of childhood cancers are curable in developed countries. Unfortunately, most children with cancer live in developing countries with limited resources and the cure rate does not reflect the same success. The low survival rates can be attributed to poor diagnosis coupled with too few specially trained doctors and nurses and the misbelief that child cancer is too difficult to cure. However, even in resource-poor environments at least 50% of childhood cancers can be cured.

Numerically, childhood cancer is not a significant cause of death in sub-Saharan African countries, which leaves childhood cancer less of a priority. In Africa, the most common paediatric health problems are malnutrition, infectious diseases such as HIV and tuberculosis. Whereas in Western countries, after accidents, cancer is the second leading cause of death in children and is a burden to the health system.

A study done by Stones et al in 2014 published the survival rates for children with cancer in South Africa at two different Units (Universitas and Tygerberg Hospitals) to be around 52%. The conclusion was that the children present late and with advanced-stage disease, which obviously affects their outcome. They also concluded that strategies to improve awareness of childhood cancer should be improved. Identifying early warning signs of childhood cancer is critical for parents and healthcare workers to ensure early diagnosis and improved cure rates. We often refer to these as red flag signs that should raise suspicion of the possibility of cancer as a diagnosis for the presenting patient.

Almost 85% of childhood cancers will present with the red flag signs, which could suggest the possibility of a childhood cancer, namely:
1. Pallor and purpura (bruising)
2. Bone and joint pain
3. Lymphadenopathy
4. Unexplained masses on any body part
5. Unexplained neurological signs
6. Changes in the orbit or eye
7. Persistent unexplained fever and weight loss

The most common cancer in children is leukaemia (blood cancer). Brain tumours are the most common non-haematological cancers, followed by nephroblastomas (kidney cancers) and neuroblastomas (sympathetic chain cells, the adrenal glands the most common site of origin).

We honour the children currently battling cancer and their families 

Once there is clinical suspicion of cancer, the child should be investigated or referred for the relevant investigations to be conducted to get to the right diagnosis. Treatment for childhood cancer includes chemotherapy, surgery or radiotherapy. These may be given separately or in combination depending on the diagnosis. Many models of care exist, but regardless of the outcome, children and families who receive compassionate, holistic care of symptomatology and address their non-physical needs are able to face their illness with dignity and energy.  

Childhood Cancer should not remain a taboo subject in South Africa and should be a topic of conversation more often so that people can be educated regarding the early warning signs and become more aware of its occurrence amongst children. Get the word out that a cure is possible. This month, which is known as Childhood Cancer Awareness Month, and throughout the year, we honour the children currently battling cancer, the families who love them, the clinicians and other caregivers treating them, the survivors of childhood cancer and the children who lost their lives to childhood cancer. 

Authors

Dr Jan Du Plessis for web 
Dr Jan du Plessis is the Head of the Paediatric  Oncology Unit in the Faculty of Health Sciences at
the University of the Free State (UFS).  


DrJonas for web
Dr Mampoi Jonas is a senior lecturer in the Paediatric Oncology, University of the Free State (UFS).

News Archive

The silent struggles of those with invisible disabilities
2016-12-13

Description: Dr Magteld Smith, invisible disabilities Tags: Dr Magteld Smith, invisible disabilities 

Dr Magteld Smith, researcher and deaf awareness
activist, from the Department of Otorhinolaryngology
at the UFS.

December is International Disability Awareness Month. Despite equality before the law and some improvements in societal attitudes, people with disabilities are still disadvantaged in many aspects of their lives. They are more likely to be the victims of crime, sexual abuse, are more likely to earn a low income or be unemployed, and less likely to gain qualifications than people without disabilities.

Demystifying disabilities is crucial

Dr Magteld Smith, a researcher at the University of the Free State (UFS) School of Medicine’s Department of Otorhinolaryngology, says that often people think the term “disability” only refers to people using a wheelchair, etc. However, this is a misperception because some individuals have visible disabilities, which can be seen, and some have invisible disabilities, which can’t be seen. Others have both visible and invisible disabilities. There is an ongoing debate as to which group has the greatest life struggles. Those with visible disabilities frequently have to explain what they can do, while individuals with invisible disabilities have to make clear what they cannot do.

Invisible disability is an umbrella term that captures a whole spectrum of invisible disabilities and the focus is not to maintain a list of specific conditions and diagnoses that are considered invisible disabilities. Invisible disabilities include debilitating fatigue, pain, cognitive dysfunctions, mental disorders, hearing and eyesight disabilities and conditions that are primarily neurological in nature.

Judging books by their covers
According to Dr Smith, research indicates that people living with invisible disabilities often suffer more strained relationships than those with visible disabilities due to a serious lack of knowledge, doubts and suspicion around their disability status.

Society might also make serious allegations that people with invisible disabilities are “faking it” or believe they are “lazy”, and sometimes think they are using their invisible disability as an “excuse” to receive “special treatment”, while the person has special needs to function.

Giving recognition and praise
“One of the most heartbreaking attitudes towards persons with invisible disabilities is that they very seldom enjoy acknowledgement for their efforts and accomplishments. The media also seldom report on the achievements of persons with invisible disabilities,” says Dr Smith.

Society has to understand that a person with a disability or disabilities is diagnosed by a medical professional involving various medical procedures and tests. It is not for a society to make any diagnosis of another person.

Dr Smith says the best place to start addressing misperceptions is for society to broaden its understanding of the vast, varying world of disabilities and be more sensitive about people with invisible disabilities. They should be acknowledged and given the same recognition as people with visible disabilities.

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