Living with Pheochromocytoma-paraganglioma
Rare tumors of the adrenal glands or nearby nerve tissue that can make hormones controlling heart rate and blood pressure.
Understanding Pheochromocytoma-paraganglioma
Pheochromocytomas form in the adrenal glands. Paragangliomas start in nerve-related cells located in the neck, chest, belly, or pelvis. These tumors can make hormones that control the body's stress reaction, heart rate, and blood pressure.
Signs & symptoms
GARD doesn't list specific symptoms, but says the tumors can make hormones that affect:
- Heart rate
- Blood pressure
- The body's stress reaction
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 and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Hormone specialists (endocrinologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 doesn't describe a cause for this condition yet.
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Pheochromocytoma-paraganglioma.
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