Arlene McFarlane: Living a normal life with sickle cell disease

Arlene McFarlane was diagnosed with sickle cell disease at age three, after experiencing one crisis after another.

“When I was younger, I was living in the country, and at that time there wasn’t a lot known about sickle cell, so most of the doctors were not familiar with it,” McFarlane said, “So back then, I was having crises after crises until one point the doctor told me, ‘Okay, most ‘sicklers’ will die by age 25, so we don’t think you will live to see age 25.’”

This death sentence did not deter McFarlane, who is now 47 years old, as according to her, she had a lot of familial and spiritual support. Though coping with sickle cell is easier for McFarlane now, there are still complications that she faces.

“I have had several complications from sickle cell disease. I end up with seizures and having strokes. It was around November/ December of last year that I had four more minor strokes,” she disclosed. “It is very hard living with sickle cell disease, but I don’t let sickle cell determine the person I want to be.”

Sickle cell disease is a hereditary illness which affects the red blood cells, whose duty is to bring oxygen to the different parts of the body. Sickle red blood cells, however, are not flexible, and are easily destroyed. They often get stuck in small blood vessels, leaving some parts of the body oxygen-deprived, which results in pain, infections and other complications.

GOING INTO CRISIS

She further said research has been a big help for individuals living with sickle cell, as they have been given a better quality of life. There are still specific precautions that have to be taken before McFarlane can enjoy some activities.

“I have to take special precautions if I am going abroad, and I can’t go places where there are low oxygen levels,” she said. “It also depends on what will trigger a crisis for you; so if I am too cold or if I get stressed out, those will bring on a crisis for me.”

She went on to explain that a sickle cell crisis is very painful and only a visit to the doctor can help.

“When you go into a crisis, you get severe pains in your joints, chest, back and leg, so you have to see a doctor as soon as possible so that they can control the pain and prevent organ damage. The doctors usually administer fluids and oxygen, if needed,” she explained.

MEDICATION

However, there is hope, as McFarlane informed The Gleaner that a medication called Hydroxurea has been instrumental is affording sicklers a better quality of life. She said the medication prevents cells from ‘sickling’, so individuals experience fewer crises.

This has allowed McFarlane to revel in things that others take for granted.

“Being on hydroxurea, I can go to the beach, go to the river, things like those. When I was younger, I couldn’t bathe in cold water; I always had to warm my water, but now, I just go into the shower, take a shower and go to my bed,” she said, laughing.

As someone who has lived with the sickle cell disease her whole life, and also lost a brother to the disease, McFarlane has a few suggestions.

“I recommend couples to get checked for the sickle cell trait, especially if they are planning to get married and start a family, and they can decide from there. For those with sickle cell, take special note of what triggers your crises, because they differ for each person,” she said.

According to the Caribbean Institute for Health Research at The University of the West Indies, individuals with sickle cell can have a normal life if they follow these steps:

1. Get informed about sickle cell disease;

2. Keep appointments with your doctor for regular check-ups;

3. Ensure that you receive all available immunisations to prevent serious infection;

4. Eat a balanced diet, with lots of fruits and vegetables;

5. Drink plenty of fluids, especially water;

6. Avoid extreme cold or heat.;

7. Keep pain medication at home. Pain often starts during the night or early morning.;

8. Avoid overexertion;

9. Exercise to your PERSONAL LIMIT;

10. Avoid stressful situations.

vanessa.james@gleanerjm.com