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Living with Hb SS disease

Sickle cell disease: an inherited blood condition in which red blood cells can take a sickle shape, causing anemia, pain episodes, and infections.

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Understanding Hb SS disease

Hb SS disease, or sickle cell disease, is a group of disorders that affects hemoglobin, the molecule in red blood cells that carries oxygen.

People have atypical hemoglobin called hemoglobin S, which can bend red blood cells into a sickle or crescent shape. Signs usually begin in early childhood. Features include anemia, repeated infections, and periodic episodes of pain. Severity varies. Some people have mild problems, while others are often hospitalized for complications. There are treatments for symptoms and for the genetic cause.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Anemia (low red blood cells)
  • Periodic episodes of pain
  • Repeated infections
  • Chest pain
  • Bone damage and bone infection
  • Kidney problems

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include autoimmune and inflammatory disease specialists, blood and bone marrow specialists, bone and joint specialists and brain and nervous system specialists.

  3. Consider 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.

  4. Connect with expert centers

    Sickle Cell Disease Foundation may keep lists of experts for this condition.

Care & treatment

Care team
autoimmune and inflammatory disease specialists (rheumatologists); Blood and bone marrow specialists (hematologists); Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists)
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
Bring these questions to your next doctor visit
Which treatments could lower pain episodes and complications for me?
How should my kidneys, lungs, and eyes be monitored?
Are newer treatments aimed at the genetic cause an option for me?

Quick facts

Symptoms usually startany time in life
InheritanceAutosomal Recessive
GenesHBB

Changes in the HBB gene cause this condition. A child inherits a changed copy of the gene from each parent (autosomal recessive).

GeneticNeurologicalKidneyBlood

Also known as: drepanocythemia; drepanocytosis; haemoglobin s disease without crisis; haemoglobin sc disease; hb s disease; hb sc disease

Patient organizations

Source: NIH GARD · Hb SS diseaseGARD ID 8614 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

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Explore research for Hb SS disease

Explore actively recruiting Hb SS disease studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Hb SS disease with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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