Living with Hereditary pheochromocytoma and paraganglioma
An inherited condition with tumors in clusters of nerve-related cells, often causing high blood pressure and racing heart.
Understanding Hereditary pheochromocytoma and paraganglioma
A paraganglioma that grows in the adrenal glands (on top of the kidneys) is called a pheochromocytoma. Others usually grow in the head, neck, or trunk. Many tumors make stress hormones that can cause high blood pressure, a pounding heartbeat, headaches, and sweating. Large head and neck tumors can cause coughing, hearing loss in one ear, or trouble swallowing. It can start in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- High blood pressure
- Pounding heartbeat (palpitations)
- Headaches
- Sweating and flushing
- Nausea and belly pain
- Chest pain
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
Neuroendocrine Tumor Research Foundation and Pheo Para Alliance 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: Neuroendocrine Tumor Research Foundation, Pheo Para Alliance
- 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 Neuroendocrine Tumor Research Foundation 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 changes in genes (also called variants) cause this condition. It is autosomal dominant, so one changed copy of the gene is enough.
Also known as: familial pheochromocytoma-paraganglioma; hereditary paraganglioma-pheochromocytoma syndrome; hereditary paraganglioma-pheochromocytoma syndromes; hereditary paragangliomas and pheochromocytomas; hereditary pheochromocytoma-paraganglioma
Patient organizations
- Neuroendocrine Tumor Research FoundationHereditary pheochromocytoma and paraganglioma · United States
- Pheo Para AllianceHereditary pheochromocytoma and paraganglioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary pheochromocytoma and paraganglioma.
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