Living with Danon disease
A genetic condition affecting the heart muscle, other muscles, and learning.
Understanding Danon disease
Signs begin about 15 years earlier in males than in females. Males usually have problems in childhood or adolescence, and females in early adulthood. Heart muscle disease is the most common symptom, occurring in all males and most females. It is often thickened (hypertrophic) or enlarged and weakened (dilated).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thickened heart muscle (hypertrophic cardiomyopathy)
- Enlarged, weakened heart (dilated cardiomyopathy)
- Intellectual disability
- Weak, floppy muscles
- Unusual walk (gait)
- Sudden stop of heart and breathing (cardiorespiratory arrest)
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 brain and nervous system specialists, genetic specialists and heart and blood vessel specialists.
- 3Consider genetic testing
Changes in LAMP2 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
Hypertrophic Cardiomyopathy Association and Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: Hypertrophic Cardiomyopathy Association, 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 Hypertrophic Cardiomyopathy Association 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
Quick facts
Changes in the LAMP2 gene cause this condition. It is X-linked, meaning the gene is on the X chromosome.
Also known as: antopol disease; danon disease, x-linked dominant; glycogen storage disease due to lamp-2 deficiency; glycogen storage disease due to lysosomal associated membrane protein 2 deficiency; glycogen storage disease type iib; glycogenosis due to lamp-2 deficiency
Patient organizations
- Hypertrophic Cardiomyopathy AssociationDanon disease · United States
- Association for Glycogen Storage DiseaseDanon disease · United States
- Danon Disease FoundationDanon disease · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Danon disease.
Explore research for Danon disease
Explore actively recruiting Danon disease 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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