Stigmatisation in sickle cell disorders

Four-year-old Ugochi, strolls into his classroom with a big smile on his face, “My first day in school” he said with so much glee on his face as his all-time dream is now a reality.

“Welcome children, this is the first…”

“Please Miss”, interrupted a clear and unshaken little voice, “I am a sickle cell boy. I take Fe …, Fo .., Oh, yellow tablets every morning. I have my bottle of water, which I will have to drink in class. When I have pains in my legs or arms, I take em, em …”

“What is sickle cell?” asks a puzzled and now worried Miss Hansel.

“My mummy will tell you all about it if you ask her,” he replied.

Ugochi’s mother and his specialist nurse were then invited to the school to give information on the inheritance, course and management of sickle cell disorders. Needless to say, Ugochi had a load of friends to look out for him in school.

STIGMATISATION – “classifying, pigeon-holing and isolation” in sickle cell or any condition or situation – can often be self-inviting.

Sickle cell disorders, due to ignorance and superstitious beliefs, were seen as a curse, and you succumb to a curse, a retribution for wrong doing or sins committed in the family. It is then understandable that consequences of wrong doing and sins committed are to be hidden.

If one hides the fact that one has sickle cell disorder, it clearly implies that it is something to be ashamed of. One effectively invites the stigmatisation. It is important to look at and fully understand the possible consequences of non-disclosure due to the fear of stigmatisation.

Generally speaking, painful crises are distressing and unpleasant but usually obvious. Adequate pain management and tender loving care go a long way towards easing the pain, comforting and reassuring the person.

However, some crises have sudden onsets and critical outcomes if not managed promptly and effectively, usually within a hospital or clinic.

Extreme lethargy, tiredness, as result of sudden drop in the haemoglobin level {aplastic anaemia}
Chest pain and shortness of breath (acute chest syndrome)
Swollen and painful abdomen (splenic sequestration)
Severe headaches, dizziness and loss of feelings (stroke)
Diarrhoea and vomiting (dehydration)

The sudden onset of the above symptoms means that these can happen anywhere, at school or in the workplace. It is therefore vital and a life-preserving requirement that the people we are with know about sickle cell disorders and how to manage crises.

Stress is a well-known cause of crises, so the stress of hiding sickle cell disorder can also be counter-productive.

A proverb in my language translates – “if you hide an illness, the illness hides you”. If you have sickle cell disorder or care for anyone with the disorder, be encouraged to share the information on the inheritance, course and management of crises so if/when needed, prompt and effective treatment will either be given or sought.

We should all be aware of the possible consequences of non-disclosure due to the fear of stigmatisation. Our very act of non-disclosure invites stigmatisation. Our non-disclosure is saying, “This is something to be ashamed of; keep away.”

With continuing health education and thereby raising awareness on the inheritance, course and management of sickle cell disorders, Stigmatisation (borne by ignorance and superstition) should soon be a thing of the past.