Living with Ackerman syndrome
A rare genetic condition with differences in the teeth, skin, eyes, and bones.
Understanding Ackerman syndrome
Features include pyramid-shaped or fused molar roots, an upper lip without a cupid's bow and a thick, wide philtrum, juvenile glaucoma, and fused or curved fingers. GARD notes there have been no further descriptions in the medical literature since 1973. GARD lists onset as childhood.
Signs & symptoms
GARD doesn't list a symptom list for this condition yet. The summary describes these features:
- Dental differences (fused molar roots, taurodontism)
- Upper lip without a cupid's bow
- Wide, thick philtrum
- Juvenile glaucoma
- Fused fingers (syndactyly)
- Curved pinky fingers (clinodactyly)
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 genetic specialists, gum, teeth and mouth specialists and skin, hair, and nail 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
- Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists); Skin, hair, and nail specialists (dermatologists)
- 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 says changes in genes (also called variants) cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: ackerman fused molar rooth syndrome; ackerman fused molar roots syndrome; molar roots, pyramidal, with juvenile glaucoma and unusual upper lip; pyramidal molar-glaucoma-upper abnormal lip syndrome; pyramidal molars-abnormal upper lip 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 Ackerman syndrome.
Explore research for Ackerman syndrome
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