Living well with sickle cell disease: Palliative care is key
If your child has sickle cell disease, you know the heart ache of watching a child in pain and unable to enjoy the simple joys of childhood. There is a way to help your child feel better and live as well as possible: ask for palliative care.
Palliative care is specialized medical treatment for people living with serious illness like sickle cell. It treats the pain, symptoms and stress of the illness, with a focus on quality of life. Palliative care is provided by a team of doctors, nurses, social workers and other therapists who work closely with your other doctors to give you an added layer of support, based on your needs and what’s important to you. It can be provided at the same time as all other treatments to help you feel as well as possible and live your life. If you, or your child has sickle cell disease – ask for a palliative care consultation. The earlier the better.
Palliative care doctors are experts in pain and symptom management, and the most common symptom of sickle cell is pain. The pain can occur in joints like knees, elbows and hips, as well as in organs, and it can last a few hours, days or sometimes weeks. It usually comes on suddenly. These pain crises can be bad enough to put sufferers in the hospital. Your palliative care team can help with medicines and techniques to relieve pain, relax and get some sleep. The right pain management plan for pain crises could keep you or your child out of the hospital and safely at home. This can make a big difference for your child both physically and emotionally, and could support them in keeping up with school attendance, homework and hobbies.
People usually have the first signs of sickle cell disease in childhood, between the ages of five and fifteen. Sickle cell disease affects your red blood cells, whose job it is to carry oxygen around your body. Irregular sickle-shaped red blood cells can block blood flow, preventing oxygen from getting around the body. The poor blood flow results in inflammation and pain, infections, and sometimes damage to organs or strokes. But there is a lot that palliative care can do to help your child live better with sickle cell disease, so they can go back to being a kid.
Your palliative care team can also help you understand complex medical information and come to terms with what is happening to you or your child. There are some new treatment options for sickle cell, based on your child’s symptoms. By understanding what is important to your family, they can help you come up with a plan for treatment that will work for your needs.
Palliative care is available in hospitals, in outpatient clinics and in some areas, for home visits. You can find providers by looking at the Palliative Care Provider Directory.