Living with Zimmermann-Laband syndrome
A rare genetic condition with overgrown gums, coarse facial features, and small or missing nails on the fingers and toes.
Understanding Zimmermann-Laband syndrome
People may also have missing or underdeveloped end bones of the fingers and toes. Other listed features include intellectual disability, very flexible joints, extra body hair and large, fleshy ears. Onset is in the newborn period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overgrown gums (gingival fibromatosis)
- Small or missing fingernails
- Coarse facial features, with a wide nose and mouth
- Large, thickened ears
- Intellectual disability
- Very flexible joints
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 brain and nervous system specialists, genetic specialists and gum, teeth and mouth specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Cure KCNH1 Foundation
- 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 doesn't name a gene for this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: gingival fibromatosis-hepatosplenomegaly-other anomalies syndrome; laband syndrome; laband-zimmermann syndrome; zimmerman laband syndrome; zimmermann-laband syndrome type 1; zls
Patient organizations
- Cure KCNH1 FoundationZimmermann-Laband syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Zimmermann-Laband syndrome.
Explore research for Zimmermann-Laband syndrome
Explore actively recruiting Zimmermann-Laband syndrome studies with HealthSpark.
Find actively recruiting studies for Zimmermann-Laband syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Zimmermann-Laband syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Zimmermann-Laband syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Zimmermann-Laband syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.