Overview
Cavernous hemangiomas of face-supraumbilical midline raphe syndrome is an extremely rare condition that combines two main features: cavernous hemangiomas (soft, spongy blood vessel growths) on the face and a visible line or ridge (called a raphe) running along the midline of the body from the chest down to the belly button area. Cavernous hemangiomas are a type of vascular malformation made up of enlarged blood vessels that form soft, bluish or reddish masses, most commonly appearing on the face. The supraumbilical midline raphe is an unusual skin finding where a line or scar-like mark appears on the front of the body above the navel, suggesting a defect in how the body's midline tissues came together during early development. This syndrome has been reported in only a handful of cases in the medical literature, making it one of the rarest vascular anomaly syndromes known. Because so few patients have been described, the full range of symptoms and the underlying cause are not well understood. The condition is typically noticed at birth or in early infancy when the facial hemangiomas and the midline raphe become visible. Treatment is generally focused on managing the hemangiomas, which may include observation, medication, laser therapy, or surgery depending on their size, location, and whether they cause complications such as bleeding, vision problems, or breathing difficulties. The midline raphe itself usually does not require treatment unless it causes cosmetic concerns.
Key symptoms:
Soft, spongy blood vessel growths (hemangiomas) on the faceBluish or reddish skin masses on the faceA visible line or ridge running down the middle of the chest and upper bellySkin discoloration along the midline of the bodyPossible swelling around the eyes or nose due to hemangiomasPotential bleeding from hemangiomasPossible vision problems if hemangiomas are near the eyesCosmetic differences on the face and chest
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Cavernous hemangiomas of face-supraumbilical midline raphe syndrome.
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Specialists
View all specialists →No specialists are currently listed for Cavernous hemangiomas of face-supraumbilical midline raphe syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Cavernous hemangiomas of face-supraumbilical midline raphe syndrome.
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Caregiver Resources
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Questions for your doctor
Bring these to your next appointment
- Q1.How severe are my child's hemangiomas, and are they likely to grow or shrink on their own?,Do any of the hemangiomas pose a risk to vision, breathing, or other functions?,Would medication like propranolol be helpful, and what are the side effects?,Will my child need surgery or laser treatment?,Is genetic testing recommended to look for an underlying cause?,How often should we schedule follow-up visits to monitor the condition?,Are there any activities or situations my child should avoid to prevent complications?
Common questions about Cavernous hemangiomas of face-supraumbilical midline raphe syndrome
What is Cavernous hemangiomas of face-supraumbilical midline raphe syndrome?
Cavernous hemangiomas of face-supraumbilical midline raphe syndrome is an extremely rare condition that combines two main features: cavernous hemangiomas (soft, spongy blood vessel growths) on the face and a visible line or ridge (called a raphe) running along the midline of the body from the chest down to the belly button area. Cavernous hemangiomas are a type of vascular malformation made up of enlarged blood vessels that form soft, bluish or reddish masses, most commonly appearing on the face. The supraumbilical midline raphe is an unusual skin finding where a line or scar-like mark appears
At what age does Cavernous hemangiomas of face-supraumbilical midline raphe syndrome typically begin?
Typical onset of Cavernous hemangiomas of face-supraumbilical midline raphe syndrome is neonatal. Age of onset can vary across affected individuals.