Living with Heart-hand syndrome type 3
A very rare syndrome described in three members of one Spanish family, with heart electrical problems and short finger bones.
Understanding Heart-hand syndrome type 3
It features heart electrical (conduction) problems, such as sick sinus syndrome and bundle-branch block. Short middle finger bones, similar to brachydactyly type C, and an extra small bone on the index fingers are also seen. Foot differences are more subtle. It is noticed in the newborn period.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes these features:
- Heart electrical (conduction) problems
- Short finger bones
- Extra small bone in the index fingers
- Subtle foot differences
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 bone and joint specialists, genetic specialists and heart and blood vessel specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- 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
Changes in genes cause this condition. It is inherited in an autosomal dominant way, which means one changed copy of a gene can be enough. GARD does not name the gene.
Also known as: atriodigital dysplasia type 3; brachydactyly and intraventricular conduction defect; cardiomelic syndrome type 3; heart hand syndrome spanish type; heart limb syndrome type 3; heart-hand syndrome, spanish type
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 Heart-hand syndrome type 3.
Explore research for Heart-hand syndrome type 3
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Find actively recruiting studies for Heart-hand syndrome type 3 with HealthSpark. Share your city to explore research near you.
- 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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