Living with WT limb-blood syndrome
A very rare inherited condition with severe low blood counts and differences in the bones of the arms and hands.
Understanding WT limb-blood syndrome
GARD describes a severe form of aplastic anemia, in which the bone marrow makes too few blood cells. It comes with differences in the forearm bones and in the hands and fingers, and a higher risk of leukemia. There have been no further descriptions in medical writing since 1995. It often shows in childhood.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- Severely low blood counts
- Forearm bone differences
- Hand and finger differences
- Higher risk of leukemia
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, bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 says changes in genes (variants) cause this condition. It lists autosomal dominant inheritance, but doesn't name a gene.
Also known as: radial-ulnar hypoplasia with bone marrow failure and/or leukemia; wt limb blood syndrome; wtsyndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with WT limb-blood syndrome.
Explore research for WT limb-blood syndrome
Explore actively recruiting WT limb-blood syndrome 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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