Living with Delta-beta-thalassemia
An inherited blood condition in which the body makes less of certain parts of hemoglobin, leading to anemia.
Understanding Delta-beta-thalassemia
To make up for this, the body makes more of a building block used in fetal hemoglobin (gamma globin). GARD lists onset in the newborn or infant period. It is autosomal recessive.
Signs & symptoms
Symptoms vary from person to person. GARD lists these as the most common:
- Anemia (low red blood cells or hemoglobin)
- Small red blood cells (microcytic anemia)
- Abnormal hemoglobin
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Cooley's Anemia 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: Cooley's Anemia 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 Cooley's Anemia Foundation
- 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 describes lower or missing delta- and beta-globin production but doesn't name a gene. It lists autosomal recessive inheritance, so a child inherits a changed copy of the gene from each parent.
Also known as: delta beta thalassemia; delta-beta thalassemia; f thalassemia
Patient organizations
- Cooley's Anemia FoundationDelta-beta-thalassemia · United States
You are more than your diagnosis
Perspectives from people navigating life with Delta-beta-thalassemia.
Explore research for Delta-beta-thalassemia
Explore actively recruiting Delta-beta-thalassemia studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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