Living with Heart-hand syndrome, Slovenian type
A rare inherited form of heart-hand syndrome with heart rhythm problems and weak heart muscle in adults, and short fingers and toes.
Understanding Heart-hand syndrome, Slovenian type
Features include progressive problems with the heart's electrical signals (cardiac conduction disease), fast irregular heart rhythms, dilated cardiomyopathy (a stretched, thinned heart muscle), and short fingers and toes, with the hands less affected than the feet. Some people also have muscle weakness.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Heart rhythm problems (arrhythmia)
- Problems with the heart's electrical signals
- Stretched, thinned heart muscle (dilated cardiomyopathy)
- Foot differences
- Short fingers or toes
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.
- 3Consider genetic testing
Changes in LMNA 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
Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: Children's Cardiomyopathy 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 Children's Cardiomyopathy 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
Changes in the LMNA gene cause this condition. It is inherited in an autosomal dominant way, which means one changed copy of the gene is enough.
Also known as: atriodigital dysplasia slovenian type; atriodigital dysplasia, slovenian type; cardiac conduction disease with dilated cardiomyopathy and brachydactyly syndrome; cardiac conduction disease-dilated cardiomyopathy-brachydactyly syndrome; heart-hand syndrome slovenian type
Patient organizations
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
Broader rare-disease groups
- 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, Slovenian type.
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