Living with Familial primary localized cutaneous amyloidosis
A rare inherited skin condition with itchy bumps or dark patches caused by protein deposits in the skin.
Understanding Familial primary localized cutaneous amyloidosis
People may have an itchy rash of grouped, thick bumps that can merge into plaques, usually on the lower legs (lichen amyloidosis). Others have dark patches, sometimes in a net-like pattern, on the back, chest or between the shoulder blades (macular amyloidosis). It can start at any time in life.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Itchy rash of grouped bumps
- Thick plaques, often on the lower legs
- Dark patches on the back or chest
- Net-like skin patterns
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 and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Amyloidosis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Amyloidosis 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 Amyloidosis Foundation 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 genes cause it. It is autosomal dominant, which means one changed copy of a gene is enough. GARD doesn't name the gene.
Also known as: familial localized cutaneous amyloidosis; fplca; hereditary primary cutaneous amyloidosis
Patient organizations
- Amyloidosis FoundationFamilial primary localized cutaneous amyloidosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial primary localized cutaneous amyloidosis.
Explore research for Familial primary localized cutaneous amyloidosis
Explore actively recruiting Familial primary localized cutaneous amyloidosis studies with HealthSpark.
Find actively recruiting studies for Familial primary localized cutaneous amyloidosis 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 Familial primary localized cutaneous amyloidosis 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 Familial primary localized cutaneous amyloidosis
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 Familial primary localized cutaneous amyloidosis 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.