Living a full, healthy life with sickle cell disease
Sickle cell disease is a lifelong disorder; yet, those affected can still lead productive and full lives. Sickle cell treatment centers—in providing specialized outpatient and inpatient care, a network of specialty physicians, genetic testing, family planning counseling, and other services—help patients with sickle cell disease experience a high quality of life.
While future therapies hold the promise of improved outcomes, early diagnosis, preventative care and access to specialty care are still the most important factors in living well with sickle cell.
Currently, the only true cure for sickle cell disease is a bone marrow/stem cell transplant. This procedure requires a matching donor and comes with its own set of risks. Patients considering transplantation should weigh these risks and discuss individually with their physician.
With proper care, sickle cell disease can be successfully managed. A hematologist (a physician with special training in blood disorders) handles a sickle cell patient’s care and identifies the best treatment options. These typically include penicillin and hydroxyurea, which can help reduce the number of pain crises for adults with severe disease. Pain medications may be needed to treat pain symptoms when they occur.
The good news is that many complications can be prevented. People with sickle cell disease should be sure to:
- stay up-to-date on vaccinations
- drink plenty of water (8 to 10 glasses per day) to stay hydrated
- have regular check-ups with their hematologist (at least twice a year)
- see your primary care doctor regularly
- get an annual check-up with your eye doctor
- avoid getting too hot or too cold
- dress in layers
- avoid cold water
- avoid places with high altitudes (mountain climbing, or cities with a high altitude)
- avoid places or situations with low oxygen (mountain climbing or exercising extremely hard, such as during military boot camps or athletic competition training)