Sickle cell disease support for members

You can only get sickle cell disease by inheriting the sickle cell gene, hemoglobin S, from both your parents. Hemoglobin S causes stiff rods to form in some of your red blood cells. These rods change your red blood cells into a crescent (sickle) shape.

Your blood vessels can’t carry these sickle cells efficiently, so blockages can form. This can cause a sickle cell crisis, resulting in pain in your hands, feet, belly, back or chest.

Sickle-shaped red blood cells also can’t deliver as much oxygen as normal red blood cells. As a result, you may feel anemic (weak and tired) throughout the day. Over time, reduced oxygen flow can also cause problems for your organs, muscles and bones.

If your doctor thinks you or your child might have sickle cell disease, they’ll order blood tests. These tests check for hemoglobin irregularities and genetic indicators of sickle cell trait.

After a sickle cell disease diagnosis, your doctor will start treatments to help keep your body protected from other diseases and infections. Daily antibiotics can help defend young children from infections that may be made worse by sickle cell disease. And keeping current on routine immunizations from childhood to adulthood can also help fend off diseases. Your doctor may also suggest additional supplements and care.

To help with sickle cell crises, you and your doctor will create a pain management plan, which our specialist support services can assist with. Typical pain management plans include prescription and over-the-counter medicines, along with heat therapy and specialized coping techniques.

There are also additional treatments for sickle cell disease, like blood transfusions and gene therapies. Your doctor can give you more details about these options and see if they’re right for you.

Along with a pain management plan, you can take several actions to keep your body fit and healthy:

• Get regular preventive care – Routine checkups and eye exams can help catch health problems early.
• Stay hydrated and exercise carefully – Dehydration can set off a sickle cell crisis. So it’s important to drink plenty of fluids, especially if you’re outside in the heat, exercising or have a fever. Make sure you check with your doctor before beginning any exercise routine.
• Eat a healthy diet – Foods that are good for your body help support your immune system. Adding leafy green vegetables, fruits and nuts to meals can also deliver folate, which helps your body make new red blood cells. Your doctor may also prescribe folic acid supplements.
• Limit alcohol and stop smoking – Alcohol can dehydrate your body, and smoking reduces the oxygen in your blood. Both can start a sickle cell crisis.