Living with Pheochromocytoma/paraganglioma syndrome 3
An inherited condition with tumors in neuroendocrine tissue that can make hormones causing high blood pressure, sweating, and a fast heartbeat.
Understanding Pheochromocytoma/paraganglioma syndrome 3
A parent passes it to their children through gene changes. The tumors can cause high levels of catecholamines, a type of hormone. Symptoms may include high blood pressure, headaches, heavy sweating, a pounding heart, pale skin, or anxiety.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- High blood pressure
- Heavy sweating
- Pounding or fast heartbeat
- Episodes of anxiety
- Hoarse voice or vocal cord problems
- Ringing in the ears that beats with the pulse
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
Changes in the genes (also called variants) cause this condition. It is autosomal dominant, which means one changed copy of the gene is enough to cause it. GARD doesn't list a specific gene.
Also known as: glomus tumors, familial, 3; paraganglioma caused by mutation in sdhc; paragangliomas 3; paragangliomas type 3; sdhc paraganglioma; sdhc-related hereditary paraganglioma-pheochromocytoma syndrome
Patient organizations
- Pheo Para AlliancePheochromocytoma/paraganglioma syndrome 3 · United States
You are more than your diagnosis
Perspectives from people navigating life with Pheochromocytoma/paraganglioma syndrome 3.
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