Living with Pheochromocytoma/paraganglioma syndrome 4
An inherited condition with tumors called paragangliomas and pheochromocytomas that may make excess hormones.
Understanding Pheochromocytoma/paraganglioma syndrome 4
Paragangliomas are tumors that arise from neuroendocrine tissue along the body's midline, from the base of the skull to the pelvis. Pheochromocytomas are paragangliomas in the adrenal gland. Some make extra catecholamine hormones, causing high blood pressure, headache, sweating, pounding heartbeat, and anxiety. Others cause symptoms by pressing on nearby areas.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tumors outside the adrenal glands
- Tumors in the head and neck
- High blood pressure and headache
- Episodes of heavy sweating
- Forceful heartbeat
- Pale skin or anxiety
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Pheo Para Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: 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 Pheo Para Alliance
- 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 lists this condition as autosomal dominant, which means one changed copy of a gene is enough to cause it. It doesn't name a specific gene.
Also known as: carotid body tumors and multiple extraadrenal pheochromocytomas; paraganglioma caused by mutation in sdhb; paraganglioma, familial malignant; paragangliomas 4; paragangliomas type 4; paragangliomas, hereditary extraadrenal
Patient organizations
- Pheo Para AlliancePheochromocytoma/paraganglioma syndrome 4 · United States
You are more than your diagnosis
Perspectives from people navigating life with Pheochromocytoma/paraganglioma syndrome 4.
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