How to Support Someone Living with Sickle Cell Disease
Did you know that more than 100,000 Americans are living with sickle cell disease? Sickle cell disease is a group of inherited hematological disorders that can lead to widespread damage and chronic pain from bone and joint damage, ulcers, and other causes.
According to the Centers for Disease Control and Prevention, sickle cell anemia is the most common and typically most severe form of sickle cell disease in the US. Sickle cell disease can greatly reduce life expectancy. While treatments and education have improved life expectancy and quality of life, more work needs to be done.
Those living with sickle cell disease face many challenges, but a lack of support from friends and acquaintances doesn’t have to be one of them.
How Can You Help?
Be understanding. A friend with sickle cell disease may cancel or decline offers—often. This isn’t because they want to. Imagine if you had to avoid fun because you were ill regularly. Don’t hold this against your friend. Invite him or her again —until your invitation and their good day lineup.
Try to plan outings that your friend can attend. Cold weather can be particularly difficult for those living with sickle cell disease. If the weather is cold rain or snow, think of an indoor activity to invite your friend to. This reduces the chances your friend will have to decline for fear of getting ill.
Show compassion. You might be out with a friend when a sickle cell pain crisis happens. They can happen anywhere and without warning. They can be excruciating and cause a lack of mobility.
When this happens in public, it can be embarrassing. Try to encourage passersby to do just that—pass by. Talk in a calm and supportive way to your friend and ask if you can help in any way, such as getting water.
Consider donating blood. Blood transfusions are a main preventive treatment for sickle cell patients. Your pain-free donation can help someone else live in less pain.
What is a sickle cell pain crisis?
According to the Mayo Clinic, one major symptom of sickle cell anemia are episodes of severe chronic pain. The pain is caused when sickle-shaped red blood cells restrict blood flow to the chest, abdomen and joints.
The pain can be very intense. It can last from a few hours to a few days—in some cases, 10 to 14 days.
Pain crises can strike anywhere and at any time, and can lead to a hospital stay. Pain crises are less common for some, with only a few episodes each year, and more often for others, who can have more than a dozen episodes per year.