World Sickle Cell Day is observed June 19. The Sickle Cell Unit, Tropical Medicine Research Institute, UWI, will celebrate World Sickle-Cell Awareness Day on that day with free screening, educational sessions and tours of the facility.)

When a relative of mine found out that her child had sickle-cell disease, it was very devastating for her, but she handled the situation well. Whenever the opportunity presented itself, she would share with family members all she knew about this condition.

Emotional and physical pain

Some children with sickle-cell disease are frequently ill and go through periods of severe pain. They may also experience periods when red blood cells break down so quickly they develop jaundice and their eyes appear yellow.

Some individuals develop leg ulcers, which we refer to as 'sore foot' in Jamaica . Having a 'sore foot' can be a source of scorn and embarrassment and some people refuse to eat from people with 'sore foot'.

The importance of sharing

My relative was open about her son's (let's call him John) condition and so we all knew what was wrong with him. As children, we understood that he could engage in some activities. John soon learnt that he could not play as other children as he would be in severe pain. I remember that the first time this happened, his mother spent an entire night with him at the hospital. Sometimes, it was rough, but I think John had a happy childhood.

The impact on school

Due to frequent bouts of illness, many people with sickle-cell disease are often absent from school. This may affect their school performance. However, I have seen many children with the condition who have had normal school lives and have done very well academically. It is important that parents inform guidance counsellors and school authorities of their child's illness to foster understanding and support.

Inappropriate labelling

You might have noticed that I have not been using the term 'sickler'. People with sickle-cell disease should be seen as individuals first and then as someone who happen to have a disorder. We should become more sensitive to inappropriate labelling of people.

Drug abuse

As a doctor, I have seen many people with sickle-cell disease who have become addicted to pain-killers. Sometimes, I feel that even us, as health-care professionals, are insensitive to the fact that, over time, some people will become addicted to these drugs. Further-more, some people living with the condition will become depressed and become dependent on these painkillers as they attempt to medicate the underlying depression. We, therefore, should look out for depression and refer for appropriate care.

Here are a few tips for families:

1. Talk freely about this condition. We all have a need for privacy but sharing does help. Share with family members and inform school authorities. Remember, it takes a village to raise a child.

2. Manage, but do not control your child's life. Many children are able to live as normal a life as possible.

3. Support groups help. There are support groups for people living with sickle-cell disease. These support groups provide emotional and informational support. Join one. It helps.

4. Seek professional help. I have never had a person living with sickle-cell disease visit my office for professional service. Yet I know there are many people whose lives would be enriched by professional counselling. I encourage us all to seek professional help.

Dr Wendel Abel is a consultant psychiatrist and head, Section of Psychiatry, Dept of Community Health and Psychiatry, University of the West Indies; email: yourhealth@gleanerjm.com.