Living with Tufted angioma of skin
A rare vascular skin growth that appears as red patches or plaques, often in infancy or early childhood.
Understanding Tufted angioma of skin
It may be present at birth or appear later, usually in infancy or early childhood. It grows slowly. It can happen at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red patches or plaques on the skin
- Localized skin lesion
- Excessive sweating (hyperhidrosis)
- Anemia in some people
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 and genetic specialists.
- 3Consider genetic testing
Changes in GNA14 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Vascular Birthmarks Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Vascular Birthmarks 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 Vascular Birthmarks 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 changes in genes (variants) cause this condition and lists the GNA14 gene.
Also known as: angioblastoma; angioblastoma of nakagawa; hypertrophic hemangioma; nakagawa angioblastoma; progressive capillary hemangioma; tufted angioma
Patient organizations
- Vascular Birthmarks FoundationTufted angioma of skin · United States
You are more than your diagnosis
Perspectives from people navigating life with Tufted angioma of skin.
Explore research for Tufted angioma of skin
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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