Living with Sandifer syndrome
A movement disorder with unusual head and neck postures that occurs along with acid reflux and sometimes a hiatal hernia.
Understanding Sandifer syndrome
People may have odd head and neck postures and movements. These occur with acid reflux, feeding difficulties, and sometimes a hiatal hernia (part of the stomach pushing up). It can occur at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Unusual head movements and postures
- Wry neck (torticollis)
- Acid reflux
- Feeding difficulties
- Inflamed esophagus (esophagitis)
- Anemia and vomiting blood
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, digestive system specialists and genetic 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); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- 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 rare disease patient organizations for support
- 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 it as occurring with gastroesophageal reflux and sometimes hiatal hernia. It does not list a gene or inheritance pattern.
Also known as: sandifer's syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Sandifer syndrome.
Explore research for Sandifer syndrome
Explore actively recruiting Sandifer syndrome studies with HealthSpark.
Find actively recruiting studies for Sandifer 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
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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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