Overview
Chronic atrial and intestinal dysrhythmia syndrome (CAID) is an extremely rare genetic condition that affects both the heart and the digestive system at the same time. The name describes its two main features: abnormal heart rhythms (atrial dysrhythmia, often called sick sinus syndrome) and abnormal movement of the intestines (intestinal dysrhythmia or chronic intestinal pseudo-obstruction). In people with CAID, the heart's natural pacemaker does not work properly, leading to a slow or irregular heartbeat. At the same time, the muscles of the intestines do not contract in the normal coordinated way, which causes symptoms that look like a bowel blockage even though there is no physical obstruction. This combination of heart and gut problems typically appears in childhood and can significantly affect quality of life. Many patients require a permanent cardiac pacemaker to manage their heart rhythm problems. The intestinal symptoms can be very challenging to treat and may require specialized nutritional support, medications to help gut motility, and sometimes surgical interventions. Because CAID is so rare, treatment is largely supportive and tailored to each patient's specific symptoms. The condition was first described in recent years, and research is still ongoing to better understand its full spectrum and develop more targeted therapies.
Key symptoms:
Slow or irregular heartbeat (sick sinus syndrome)Severe bloating and abdominal distensionChronic constipationNausea and vomitingAbdominal pain and crampingEpisodes that mimic bowel obstruction without a physical blockagePoor appetiteWeight loss or failure to thrive in childrenFatigue and low energyDizziness or fainting from slow heart rateDifficulty tolerating normal mealsMalnutrition
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Chronic atrial and intestinal dysrhythmia syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Chronic atrial and intestinal dysrhythmia syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Chronic atrial and intestinal dysrhythmia syndrome.
Community
No community posts yet. Be the first to share your experience with Chronic atrial and intestinal dysrhythmia syndrome.
Start the conversation →Latest news about Chronic atrial and intestinal dysrhythmia syndrome
No recent news articles for Chronic atrial and intestinal dysrhythmia syndrome.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Does my child (or do I) need a pacemaker, and when should it be placed?,What dietary changes can help manage the intestinal symptoms?,Are there medications that can improve gut motility in this condition?,How often should heart rhythm and pacemaker function be monitored?,What are the signs of a pseudo-obstruction crisis, and what should I do if one occurs?,Is genetic counseling recommended for our family, and should other family members be tested?,Are there any clinical trials or new treatments being studied for CAID?
Common questions about Chronic atrial and intestinal dysrhythmia syndrome
What is Chronic atrial and intestinal dysrhythmia syndrome?
Chronic atrial and intestinal dysrhythmia syndrome (CAID) is an extremely rare genetic condition that affects both the heart and the digestive system at the same time. The name describes its two main features: abnormal heart rhythms (atrial dysrhythmia, often called sick sinus syndrome) and abnormal movement of the intestines (intestinal dysrhythmia or chronic intestinal pseudo-obstruction). In people with CAID, the heart's natural pacemaker does not work properly, leading to a slow or irregular heartbeat. At the same time, the muscles of the intestines do not contract in the normal coordinate
How is Chronic atrial and intestinal dysrhythmia syndrome inherited?
Chronic atrial and intestinal dysrhythmia syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Chronic atrial and intestinal dysrhythmia syndrome typically begin?
Typical onset of Chronic atrial and intestinal dysrhythmia syndrome is childhood. Age of onset can vary across affected individuals.
Which specialists treat Chronic atrial and intestinal dysrhythmia syndrome?
2 specialists and care centers treating Chronic atrial and intestinal dysrhythmia syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.