Living with LMNA-related cardiocutaneous progeria syndrome
A rare inherited condition that affects the skin and heart and gives a prematurely aged appearance starting in adulthood.
Understanding LMNA-related cardiocutaneous progeria syndrome
Skin changes begin in adulthood and cause a prematurely aged look: thinning and graying of scalp hair, loss of fat under the skin, and tight skin. Heart and blood vessel changes are prominent. Eyebrows and eyelashes are lost in childhood, and there is a tendency to develop cancers.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Loss of eyebrows and eyelashes
- Hair loss (alopecia universalis)
- Thinning and graying scalp hair
- Hardening of the arteries (atherosclerosis)
- Skin cancer (basal cell carcinoma)
- Bleeding inside the skull
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 genetic specialists, heart and blood vessel specialists and skin, hair, and nail 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
LMNA Cardiac Diseases Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Heart and blood vessel specialists (cardiologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: LMNA Cardiac Diseases Network
- 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 LMNA Cardiac Diseases Network 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
It is caused by changes in the LMNA gene. A person can have it after inheriting one changed copy of the gene (autosomal dominant).
Also known as: lamin a/c related cardiocutaneous progeria syndrome; lcps
Patient organizations
- LMNA Cardiac Diseases NetworkLMNA-related cardiocutaneous progeria syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with LMNA-related cardiocutaneous progeria syndrome.
Explore research for LMNA-related cardiocutaneous progeria syndrome
Explore actively recruiting LMNA-related cardiocutaneous progeria syndrome studies with HealthSpark.
Find actively recruiting studies for LMNA-related cardiocutaneous progeria syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting LMNA-related cardiocutaneous progeria syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for LMNA-related cardiocutaneous progeria syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your LMNA-related cardiocutaneous progeria syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.