Living with Facial hemiatrophy
A slowly progressing condition in which the skin and soft tissue on one side of the face shrink.
Understanding Facial hemiatrophy
It sometimes affects both sides of the face and occasionally the arm, trunk, or leg. It can worsen for many years and then stabilize. Severity varies a lot. It occurs from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shrinking of skin and tissue on one side of the face
- Facial asymmetry
- Small lower jaw (micrognathia)
- Darker skin patches
- Muscle changes
- Seizures
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 and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Facial Pain Association and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Autoimmune Association, Facial Pain Association, Global Autoimmune Institute
- 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 Autoimmune Association 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 the cause is not well understood and may differ among people.
Also known as: atrophy of half of face; atrophy of one side of the face; facial trophoneurosis; hemifacial atrophy; parry romberg syndrome; parry-romberg syndrome
Patient organizations
- Autoimmune AssociationFacial hemiatrophy · United States
- Facial Pain AssociationFacial hemiatrophy · United States
- Global Autoimmune InstituteFacial hemiatrophy · United States
- FACES: The National Craniofacial AssociationFacial hemiatrophy · United States
- myFaceFacial hemiatrophy · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Facial hemiatrophy.
Explore research for Facial hemiatrophy
Explore actively recruiting Facial hemiatrophy studies with HealthSpark.
Find actively recruiting studies for Facial hemiatrophy 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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