Living with Scleromyxedema
A rare, severe skin condition with firm bumps and thick skin that often involves internal organs.
Understanding Scleromyxedema
It causes small firm bumps and thick, scleroderma-like skin. It also includes extra connective tissue cells without a thyroid disorder and abnormal proteins in the blood (monoclonal gammopathy). It often involves internal organs and can affect many body systems. It starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Small skin-colored bumps (papules)
- Thick, stiff skin
- Tight skin on the fingers
- Joint pain
- Muscle weakness in upper arms and legs
- Trouble swallowing
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 cause of scleromyxedema is not known.
Also known as: arndt-gottron disease; arndt-gottron syndrome; generalised lichenoid papular eruption; generalised papular and sclerodermoid lichen myxedematosus; generalized lichenoid papular eruption; generalized papular and sclerodermoid lichen myxedematosus
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 Scleromyxedema.
Explore research for Scleromyxedema
Explore actively recruiting Scleromyxedema studies with HealthSpark.
Find actively recruiting studies for Scleromyxedema 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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