Living with Dennis-Fairhurst-Moore syndrome
A rare genetic bone condition with fractures at birth, a thin skeleton, a soft skull, and distinct facial features.
Understanding Dennis-Fairhurst-Moore syndrome
Features include multiple fractures present at birth, slender ribs and long bones, and a skull that has not fully hardened. Facial features can resemble Hallermann-Streiff syndrome. Small eyes, cataracts, and underdeveloped lungs have also been reported.
Signs & symptoms
GARD doesn't list a symptom list. Its summary describes these features:
- Multiple fractures present at birth
- Slender ribs and long bones
- Skull not fully hardened
- High forehead and small jaw
- Small eyes and cataracts
- Underdeveloped lungs
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, brain and nervous system specialists, eye disease 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 Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: National Foundation for Ectodermal Dysplasias
- 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 Foundation for Ectodermal Dysplasias 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
GARD describes this as a genetic condition but doesn't describe a specific cause yet.
Also known as: dennis fairhurst moore syndrome; hallermann streiff françois syndrome severe form; hallermann streiff like syndrome; hallermann-streiff-françois syndrome, severe form; hallermann-streiff-like syndrome; severe hallermann-streiff-françois syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Dennis-Fairhurst-Moore syndrome.
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