Living with Severe dermatitis-multiple allergies-metabolic wasting syndrome
A rare genetic skin condition from birth with severe red scaly skin, many food allergies, and poor growth and nutrition.
Understanding Severe dermatitis-multiple allergies-metabolic wasting syndrome
It causes red, scaly skin all over the body (erythroderma) with severe psoriasis-like dermatitis, thick skin on the palms and soles, high IgE levels, multiple food allergies, and metabolic wasting. Other features may include thin hair, nail changes, repeated infections, mild developmental delay, and heart defects.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red, scaly skin (erythroderma)
- Dry, scaly skin (ichthyosis)
- Multiple food allergies
- Poor weight gain (failure to thrive)
- Repeated skin and breathing infections
- Sparse hair
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 allergy and immune system specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in DSG1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists); 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
It is caused by changes in the DSG1 gene. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: congenital erythroderma-hypotrichosis-recurrent infections-multiple food allergies syndrome; congenital erythroderma, hypotrichosis, recurrent infections, multiple food allergies syndrome; erythroderma, congenital, with palmoplantar keratoderma, hypotrichosis, and hyper ige; erythroderma, congenital, with palmoplantar keratoderma, hypotrichosis, and hyper-ige; erythroderma, congenital, with palmoplantar keratoderma, hypotrichosis, recurrent infections, and multiple food allergies; sam syndrome
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 Severe dermatitis-multiple allergies-metabolic wasting syndrome.
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