Living with Non-involuting congenital hemangioma
A rare birthmark made of extra blood vessels in the skin that is present at birth and does not fade away.
Understanding Non-involuting congenital hemangioma
NICH looks like an oval, purplish mark or bump and can appear on any part of the body. It grows as the child grows. Unlike other hemangiomas, it does not shrink and disappear (involute) on its own. GARD lists onset as during pregnancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Strawberry-like mark (hemangioma)
- Small, widened blood vessels in the skin (telangiectasia)
- Calcium deposits under the skin
- Hemangioma on the middle of the forehead
- Hemangioma in the groin or genital area (perineal)
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Vascular Birthmarks Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists)
- 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 doesn't describe a cause for this condition yet.
Also known as: nich; nich - non-involuting congenital hemangioma; nich - noninvoluting congenital hemangioma; noninvoluting congenital hemangioma
Patient organizations
- Vascular Birthmarks FoundationNon-involuting congenital hemangioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Non-involuting congenital hemangioma.
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