Living with Carney-Stratakis syndrome
A rare family condition in which tumors form in the digestive tract and in nerve tissue, often in more than one place.
Understanding Carney-Stratakis syndrome
The tumors often appear in several places in the body. GARD says it usually shows up in the teen years or adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly pain
- Bleeding in the digestive tract
- Blocked intestines
- Trouble swallowing (dysphagia)
- Hearing loss
- Weakness of nerves in the head and face (cranial nerve paralysis)
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 cancer specialists, genetic specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
GIST Support International may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: GIST Support International
- 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 GIST Support International
- 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 cause this condition. It is inherited in an autosomal dominant way, so one changed copy of a gene can cause it. No specific gene is listed.
Also known as: carney dyad; carney stratakis dyad; carney stratakis syndrome; carney-stratakis dyad; gist-paraganglioma dyad; paraganglioma and gastric stromal sarcoma
Patient organizations
- GIST Support InternationalCarney-Stratakis syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Carney-Stratakis syndrome.
Explore research for Carney-Stratakis syndrome
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- Recruiting studies from ClinicalTrials.gov
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- 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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