Living with Hyperostosis interna frontalis
A condition, also called Morgagni-Stewart-Morel syndrome, with thickened front skull bone, weight gain, and extra hair growth.
Understanding Hyperostosis interna frontalis
Other main features are obesity and extra hair growth (hypertrichosis). Some people also have seizures, headaches, diabetes insipidus, and sex gland changes. The cause is not fully understood. It often shows in adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thickened front skull bone
- Obesity
- Excess hair growth
- Headache or migraine
- Diabetes mellitus
- Behavior changes
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 bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Headache Foundation and World Craniofacial Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Expert lists: National Headache Foundation, World Craniofacial 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 National Headache Foundation and other patient organizations
- 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
The cause is not fully understood. GARD lists autosomal dominant and X-linked inheritance.
Also known as: enlargement of the inner surface of the frontal bone; excessive growth of inner surface of the frontal bone; hyperostosis frontalis interna; hyperostosis of the internal surface of the frontal bone; hypertrophy of the internal surface of the frontal bone; increased ossification of the internal surface of the frontal bone
Patient organizations
- National Headache FoundationHyperostosis interna frontalis · United States
- World Craniofacial FoundationHyperostosis interna frontalis · United States
- Children's Craniofacial AssociationHyperostosis interna frontalis · United States
- FACES: The National Craniofacial AssociationHyperostosis interna frontalis · United States
You are more than your diagnosis
Perspectives from people navigating life with Hyperostosis interna frontalis.
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