Living with Syringocystadenoma papilliferum
A noncancerous skin growth that appears in childhood or the teens, usually as a bump or plaque on the head or neck.
Understanding Syringocystadenoma papilliferum
It occurs during childhood or the teen years. It usually shows as a small bump (papule) or a plaque on the head and neck. It may arise in a skin birthmark such as a sebaceous nevus. Removing the whole growth is curative.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Small bump (papule) on the skin
- Plaque on the head or neck
- Firm lump under the skin
- Sparse scalp hair
- Blistering skin
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 cancer specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in BRAF 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
- Cancer specialists (oncologists); 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
GARD lists the BRAF gene for this condition. It may arise within a sebaceous nevus (a type of birthmark).
Also known as: fistulous vegetative verrucous hydradenoma; naevus syringocystadenomatosus papilliferus; nevus syringocystadenomatosus papilliferus; papillary syringadenoma; papillary syringadenoma (morphologic abnormality); papillary syringadenoma (syringocystadenoma papilliferum)
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 Syringocystadenoma papilliferum.
Explore research for Syringocystadenoma papilliferum
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