How to cope and live with Sickle Cell Disease

What is Sickle Cell Disease (SCD)?

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Healthy red blood cells are round and they move through small blood vessels, carrying oxygen to all parts of the body. For someone with SCD, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”. Sickle cells die early in comparison to non-sickle cells, which causes a constant shortage of red blood cells. Sickle cells can get stuck in small blood vessels and block the flow of blood and oxygen to organs in the body. These changes in cells can cause repeated episodes of severe pain, organ damage, serious infections, or even stroke.{{more}}

What causes Sickle Cell Disease?

SCD is inherited in the same way that people get the colour of their eyes, skin, and hair. A person with SCD is born with it. People cannot “catch” SCD from being around a person who has it.

How is Sickle Cell Disease treated?

The goals of treating SCD are to relieve pain and to prevent infections, eye damage, and strokes. There is no single best treatment for all people with SCD. Treatment options are different for each person, depending on the symptoms. Treatments can include receiving blood transfusions, receiving intravenous therapy (fluids given into a vein), and medications to help with pain.

Six Steps to Living Well with Sickle Cell Disease:

You can live a full life and enjoy most of the activities that other people do. The following tips will help you stay as healthy as possible:

Find good medical care Sickle Cell Disease is a complex disease. Good quality medical care from doctors and nurses who know a lot about the disease can help prevent some serious problems. Often, the best choice is a hematologist (a doctor who specializes in blood diseases) working with a team of specialists.

Get regular check-ups Regular health check-ups with a primary care doctor can help prevent some serious problems.

Prevent infections Common illnesses, like influenza, quickly can become dangerous for a person with SCD. The best defense is to take simple steps, like washing your hands frequently, to help prevent infections.

Learn healthy habits Drinking 8 to 10 glasses of water every day and eating healthy food will help to maintain hydration and proper nutrition. People with SCD should maintain a balanced body temperature, getting neither too hot nor too cold. Participating in physical activity to help stay healthy is very important. However, it’s essential that you don’t overdo it, rest when tired, and drink plenty of water.

Look for clinical studies New clinical research studies occur frequently around the world and these studies might give you access to new medicines and treatment options.

Get support

Find other patients to get support or community-based organization that can provide information, assistance, and support.

Coping with the stress of SCD

Preventing and managing stress can help lower your risk of serious health problems associated with SCD. You can prevent or lessen stress by:

Plan ahead and prepare for stressful events. Some stress may be hard to avoid, but you can find ways to manage stress by recognizing when you feel stressed; taking time to relax; getting active and eating healthy; and getting support from family and friends.

Dr Miller is Health Psychologist at the Milton Cato Memorial Hospital.