Living with Primary cutaneous amyloidosis
A skin condition in which abnormal protein clumps build up in the skin, causing itchy, dark or bumpy patches.
Understanding Primary cutaneous amyloidosis
Patches of skin have abnormal texture or color. There are three forms. Lichen amyloidosis causes very itchy, scaly, reddish-brown thick patches, usually on the shins. Macular amyloidosis causes flat, dark brown, mildly itchy patches, most often on the upper back. Nodular amyloidosis causes firm pink, red or brown bumps that usually don't itch. The patches usually arise in mid-adulthood, can stay for months to years and may return.
Signs & symptoms
Symptoms depend on the form. GARD describes these:
- Itchy, scaly, thick patches (lichen form)
- Flat, dark brown patches (macular form)
- Firm pink, red or brown bumps (nodular form)
- Patches on the shins or upper back
- Patches that come back
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.
- 4Connect with expert centers
Amyloidosis Support Groups Inc. and Amyloidosis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Amyloidosis Support Groups Inc., 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 Support Groups Inc. 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
GARD says amyloid proteins build up in the skin. It lists autosomal dominant inheritance for some cases but doesn't name a gene.
Also known as: plca; primary localised cutaneous amyloidosis; primary localized cutaneous amyloidosis
Patient organizations
- Amyloidosis Support Groups Inc.Primary cutaneous amyloidosis · United States
- Amyloidosis FoundationPrimary cutaneous amyloidosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary cutaneous amyloidosis.
Explore research for Primary cutaneous amyloidosis
Explore actively recruiting Primary cutaneous amyloidosis studies with HealthSpark.
Find actively recruiting studies for Primary 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 Primary 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 Primary 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 Primary 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.