Sickle Cell Transcript

Opening: This audio segment on pain from sickle cell disease is brought to you by The Resource Center of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York City, and is made possible through a generous grant from The Mayday Fund.

Pain is the most common symptom of sickle cell disease. Before we go into what treatments are available, let’s talk a little about the disease itself.

In sickle cell disease, red blood cells are misshapen. Red blood cells should be round and smooth allowing the cells move easily through your blood vessels. If you have sickle cell disease, you have abnormal hemoglobin. This is a protein found in red blood cells. The abnormal hemoglobin can make the red blood cells change shape, from round and smooth to sickle shaped. Sickle shaped blood cells are hard and sticky and have a hard time moving through blood vessels. This may cause your blood vessels to get clogged. This can lead to a painful sickle cell crisis.

In the United States, about fifty thousand African-Americans have the disease. It affects people all over the world.

Sickle cell disease is inherited. This means it is passed down through families, from parents to their children. It is not a contagious disease. You cannot spread it from one person to another through the air or through contact.

Pain in the arms, hands, legs, feet or back is very common. So is stomach pain. There are other health problems, too. If you have sickle cell disease, you are more likely to get infections. You can also be anemic. This means you have a low red blood cell count. Anemia can make you feel tired. Your bones, liver or kidneys can be damaged, and some people have eye problems.

Twenty percent of people with the disease have frequent, severe sickle cell crises. Pain during a crisis can be terrible. Certain things that can make a crisis start. A crisis can happen if you have an infection like a cold or the flu, if you’re overtired, if you’re exercising too hard, if you’re not drinking enough water or other fluids, and if you don’t have enough oxygen in your blood. Also, the cold weather can bring on a crisis.

Unfortunately, there is no cure for sickle cell disease. But there are treatments for the disease and to help you to prevent a painful crisis. Your doctor can prescribe hydroxyurea. This drug might reduce the chance that your red blood cells will change into the sickle shape. Some doctors also recommend that patients take extra folic acid, a vitamin. Your doctor can also prescribe medicine to help with anemia. One of these drugs is called erythropoetin. Blood transfusions are sometimes given to help anemia, too.

The pain from a sickle cell crisis may be so bad that you have to go to the emergency room. Some sickle cell patients have had a bad experience in emergency rooms and hospitals. You may have had this happen to you. Doctors and nurses question your pain and why you want pain medicine. Doctors, nurses, and family members all need to understand that wanting medicine to help the severe pain of a sickle cell crisis does not mean you’re a drug addict or that you’re trying to get high. It is very important that patients find a doctor who they trust to believe them and take care of them. It is just as important for doctors and nurses to trust the patient in severe crisis who comes to the emergency room for help.

For many patients, opioid or narcotic medicines can be very helpful during a painful crisis. Patients who have many crises can sometimes be helped by taking daily opioid medications. Extra pain medication can be taken when there is a crisis. Daily opioids can help reduce the number of crises and make the pain less severe.

Other medications that may help reduce sickle cell pain are anti-inflammatory medications, like ibuprofen, and steroids.

Your doctors may also suggest that you see a physical therapist. Physical therapists use gentle exercises and heat and cold treatments to help ease your pain.

It may be helpful for you to see a psychologist, social worker or psychiatrist to get help coping with the disease and the pain.

Your family members may also be affected by the illness. It may be very stressful and frustrating to deal a loved one who has special health needs and often has to go to the hospital. Speaking with a health care professional about concerns, stress, and frustration can be very helpful to family members.

We hope that this segment has provided you with some basic information about pain from sickle cell disease. Remember that there’s every reason to stay hopeful this problem can be helped.