Community
Sickle Cell Disease Community
For people living with Sickle Cell Disease, their families, and caregivers.
This information is for educational purposes only and is not medical advice. Always consult your healthcare provider about your specific condition and treatment.
When to seek help
Seek emergency care for chest pain, trouble breathing, fever over 101°F, or sudden weakness - these can be life-threatening.
If you are experiencing a medical emergency, contact your local emergency services immediately.
Overview
Sickle cell disease is an inherited blood disorder. Red blood cells become crescent-shaped and break down early, causing anemia and sudden painful blockages in blood vessels called pain crises.
Prevalence
About 100,000 people in the US live with sickle cell disease; it is most common in people of African, Mediterranean, or Middle Eastern descent.
Symptoms
- Pain crises - sudden severe pain in the chest, back, arms, or legs
- Fatigue and anemia
- Frequent infections
- Swelling in the hands and feet
Causes
Sickle cell disease is caused by an inherited change in hemoglobin, the protein in red blood cells that carries oxygen. The abnormal hemoglobin makes red cells stiff and crescent (sickle) shaped.
Types
- HbSS (sickle cell anemia) - most common and most severe
- HbSC - usually a milder form
- HbS beta thalassemia - a mixed form
Diagnosis
Diagnosed with a blood test. In the US, all newborns are screened for sickle cell disease shortly after birth. A hemoglobin test confirms the type.
Treatment
Treatment includes hydroxyurea to reduce crises, pain management, blood transfusions, and preventing infections with vaccines and antibiotics. Some people are cured with a stem cell transplant; gene therapies are emerging.
Living with it
- Stay hydrated - dehydration can trigger a pain crisis
- Avoid extreme cold and high altitudes
- Get all recommended vaccinations and take preventive antibiotics if prescribed
- See a hematologist regularly
- Have a pain plan and treat pain early
Complications
- Pain crises (vaso-occlusive crises)
- Acute chest syndrome - a serious lung complication
- Stroke
- Frequent infections
- Anemia and fatigue
Resources
Frequently asked questions
What triggers a pain crisis?
Dehydration, infection, stress, cold, and high altitude are common triggers. Sometimes there is no clear trigger.
Is there a cure?
A bone marrow or stem cell transplant can cure sickle cell disease for some people, and gene therapies are emerging. Most people manage it with medications and preventive care.
What is hydroxyurea?
A daily pill that reduces pain crises and complications by increasing fetal hemoglobin. It is the most common disease-modifying treatment.
Join the Sickle Cell Disease Community community
Talk with people who understand, share what helps, and find support from others living with sickle cell disease community. Private, moderated, and free.
Posts in this community reflect personal experiences, not medical advice. Always talk to your doctor before changing your treatment.