Living with Sickle cell-hemoglobin C disease
A type of sickle cell disease that changes red blood cell shape, causing anemia and episodes of severe pain.
Understanding Sickle cell-hemoglobin C disease
Symptoms include anemia and episodes of tiredness and extreme pain (vaso-occlusive crisis). Severity varies from person to person. People with this condition need to take care to avoid infection and have regular checkups to make sure organs are working well. When anemia becomes severe, a blood transfusion may be needed, and a bone marrow transplant may be suggested depending on severity.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Based on its summary, symptoms include:
- Anemia
- Tiredness
- Episodes of extreme pain (vaso-occlusive crisis)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists and genetic specialists.
- 3Consider genetic testing
Changes in HBB are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Sickle Cell Disease Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Sickle Cell Disease Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Sickle Cell Disease Association of America and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists changes in the HBB gene, which tells the body how to make hemoglobin. A child inherits a changed copy of the gene from each parent (autosomal recessive).
Also known as: double heterozygous for hb s and hb d; hbs-hbc disease; hbsc disease; hemoglobin s-c disease; hemoglobin s/c; hemoglobin s/c disease
Patient organizations
- Sickle Cell Disease Association of AmericaSickle cell-hemoglobin C disease · United States
- Sickle Cell Disease FoundationSickle cell-hemoglobin C disease · United States
- Sickle Cell ConsortiumSickle cell-hemoglobin C disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Sickle cell-hemoglobin C disease.
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