WHEN Richard Burton’s parents discovered he had sickle cell disease at age 12, he was no longer allowed to participate in sporting activities.

“My parents basically cut me off from all sporting activities… because the thought was that any physical exertion would bring on a crisis,” Burton told the Jamaica Observer in a recent interview. “So for most of my teen life, I was not allowed to participate in any physical activity.”

Now 43 years old, Burton has so far participated in about seven marathons, the most recent being the fourteenth staging of the Reggae Marathon in Negril, Westmoreland, on December 6. Though he has been pushing himself since becoming an adult, participating in swimming, football and now taking on marathons, the Reggae Marathon was his first full marathon.

“The fact that sicklers, for the most part, have been seen as, for want of a better word, handicapped… because of the illness you are not allowed or not advised to participate in a lot of physical activities; I saw it (Reggae Marathon) as a challenge for me and that was the reason [for entering],” said Burton.

“It was a challenge for me and hopefully a motivation for other sicklers to say that ‘look, the sickle cell disease is not a death sentence’,” he continued. “It’s not something to say, ‘well I have sickle cell, I can’t do this and I can’t do that’; it’s really a matter of motivating yourself.”

He said he completed the full marathon to prove that people with sickle cell disease are capable of physical activity and to set an example for others who might be under the misconception that once you have sickle cell you cannot engage in any physical activity.

Sicklers refer to people who have sickle cell disease. The condition is an inherited disorder in which red blood cells are abnormally shaped as a result of an abnormal type of haemoglobin, according to information from the National Health Fund. Normal red blood cells are soft and round and can move through small blood tubes in the body to deliver oxygen. However, people with sickle cell disease have red blood cells that are hard, sticky and sickle-shaped, and do not last as long as normal red blood cells. The National Health Fund says this can result in the decrease of available red blood cells which can lead to low blood count. The sickle cells can block blood vessels, resulting in reduced blood flow to the tissues causing pain and damage to organs including the spleen, kidneys and liver.

How did Burton feel after the marathon?

“Besides the expected feeling of finishing 26 miles, I felt great!” Burton told the Sunday Observer. “There wasn’t any pain.

“One of the doctors was thinking that I should get IV drip, just to make sure I didn’t fall into a crisis, but that wasn’t necessary,” he shared. “…I didn’t feel any major discomfort and it felt like an achievement having completed the race and got my medal.”

Before race day, Burton took the necessary precautions to ensure he was in good health to take on the challenge. He said that he made a few visits to the clinic as well as to his personal doctor. He also ensured he remained hydrated and that he warmed up properly before the start of the race.

He explained that for sicklers, one of the biggest challenges is the painful episodes experienced. He said some experience more crises than others.

“I find that when I am very active, I don’t get those crises very often,” he disclosed. “Not sure what my next (crisis) will be, but just to say the physical activities are helpful in that the more active you are, I find that the less crises I have.”

“Right now I am great. I have no complaints,” he continued. “For the year I have had probably about two crises. I consider myself very lucky.”

He shared that outside of when he experiences his painful episodes, he tries to live a normal life which includes, going to church, various social events, among other activities. He also has a daughter.

His advice to other sicklers who may want to consider becoming more physically active: “Go for it, but don’t just jump into it. Make sure you prepare as I had. I took almost a year preparing, going to the gym, once or twice per week, running almost every evening.

“For anybody, whether you are a sickler or not, it’s something you have to prepare for. But I will say, if you have the time, start preparing and go for it.”