Overview
Hemihypertrophy-intestinal web-corneal opacity syndrome is an extremely rare condition that has been described in medical literature but is now considered an obsolete diagnostic term in Orphanet, meaning it may have been reclassified or merged with another condition. The syndrome was characterized by a combination of three main features: hemihypertrophy (where one side of the body grows larger than the other), intestinal web (a thin membrane or tissue that partially blocks the inside of the intestine), and corneal opacity (a clouding of the clear front part of the eye that can affect vision). These features together affect multiple body systems, including the musculoskeletal system, the digestive tract, and the eyes. Because this condition is obsolete in current classification systems, very little published data exists about its genetic cause, natural history, or specific treatments. Patients who were previously diagnosed with this syndrome may now fall under a broader or updated diagnostic category. Management has generally been supportive and symptom-based, addressing each feature individually — for example, surgery for intestinal obstruction, ophthalmologic care for corneal clouding, and orthopedic monitoring for asymmetric growth. If you or a family member has been given this diagnosis, it is important to work with a clinical geneticist to determine whether a more current diagnosis applies.
Also known as:
Key symptoms:
One side of the body growing larger than the other (hemihypertrophy)Clouding of the front of the eye (corneal opacity)Blockage or narrowing inside the intestine due to a web-like membraneUneven limb length or sizeVision problems or reduced clarity of sightFeeding difficulties in infancyVomiting or signs of intestinal obstructionAbdominal pain or bloating
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity 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 OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome.
Community
No community posts yet. Be the first to share your experience with OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome.
Start the conversation →Latest news about OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome
No recent news articles for OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Is this diagnosis still considered current, or should we pursue updated genetic testing to reclassify the condition?,How often should my child have abdominal ultrasounds to screen for tumors related to hemihypertrophy?,What surgical options are available for the intestinal web, and what is the expected recovery?,What treatments can help with the corneal opacity, and will my child's vision improve?,Should we see a geneticist to look for an underlying genetic cause?,What signs of complications should I watch for at home?,Are there any clinical trials or research studies that might be relevant?
Common questions about OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome
What is OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome?
Hemihypertrophy-intestinal web-corneal opacity syndrome is an extremely rare condition that has been described in medical literature but is now considered an obsolete diagnostic term in Orphanet, meaning it may have been reclassified or merged with another condition. The syndrome was characterized by a combination of three main features: hemihypertrophy (where one side of the body grows larger than the other), intestinal web (a thin membrane or tissue that partially blocks the inside of the intestine), and corneal opacity (a clouding of the clear front part of the eye that can affect vision).
At what age does OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome typically begin?
Typical onset of OBSOLETE: Hemihypertrophy-intestinal web-corneal opacity syndrome is neonatal. Age of onset can vary across affected individuals.