Living with Elastoderma
A rare skin condition with loose, saggy skin in one area, most often on the neck, arms, or legs.
Understanding Elastoderma
The neck and limbs, especially the elbows and knees, are most often affected. It usually begins in the teen years or adulthood and generally occurs on its own in people with no family history. GARD says the exact cause is not known and there is no standard therapy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Loose, saggy skin (cutis laxa)
- Early skin wrinkling
- Small skin bumps (papules)
- Skin nodules
- Skin sensitivity (hyperesthesia)
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 skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- 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 Children's Skin Disease 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
GARD says the exact cause is unknown. It generally occurs on its own in people with no family history.
Patient organizations
- Children's Skin Disease FoundationSkin diseases · 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 Elastoderma.
Explore research for Elastoderma
Explore actively recruiting Elastoderma studies with HealthSpark.
Find actively recruiting studies for Elastoderma 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
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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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