By Soraya Downie
Living with the disease
“It’s painful at times but I’ve just accepted that it’s been a part of my life for so long and it always will be.”
A recent episode left Bola in hospital for two weeks and was the most painful one he had experienced in his life so far.
“People will think, as you get older, you are more likely to bare the pain. There’s no truth in that at all, pain is pain, whether you’re five or fifty. I just think children wouldn’t be able to deal with it, as well as young people and adults do.”
A recent survey conducted by Roam showed that 40% of people are unaware of what the disease is, but a quarter of us knew someone with it.
Sickle Cell is an inherited disease, which is incurable.
The disease is inherited through each parent, but some people have been diagnosed with Sickle Cell Trait.
This is where they have inherited Sickle Cell from one parent and do not experience the symptoms that people with Sickle Cell Anaemia do.
Red blood cells form an abnormal crescent shape, known as the ‘sickle’ and differ significantly from the typical disc shape.
The abnormality is caused by the haemoglobin S, a type of protein found within red blood cells that carries oxygen.
The haemoglobin S therefore changes the usual shape of the red blood cells and delivers less oxygen to the body’s tissues.
These sickles can even get caught in small blood vessels in the body and break into smaller pieces, which can interrupt a person’s blood flow. This can cause a massive decrease in the amount of oxygen flowing through the body.
What sufferers experience
Sickle Cell is painful from the initial stages when it is first detected and diagnosed, but it can become worse overtime. A person with Sickle Cell can experience periods of fatigue, paleness, rapid heart rate, shortness of breath and outbreaks of jaundice (yellowing of the eyes and skin).
Younger children are more likely to have attacks of abdominal pain, ranging from mild to very severe have to spend time in hospital.
Most likely to be affected
The disease is much more common among African and Caribbean communities and other cultures such as South and Central America and the Middle East.
Georgia Oakley, 28, a nursery nurse, from Stockwell, knows the affect of Sickle Cell on children as young as three years old.
“I often see many young black children who will have to take off and go hospital to get the necessary help. Their parents will phone and say, he or she won’t be in till next week and it usually involves a lot of abdominal pain.”
The affects on the disease differs from person to person, but Sickle Cell Anaemia can have a lot of complications.