Living with Familial hyperaldosteronism type II
An inherited form of high aldosterone with high blood pressure that does not improve with steroid medicine.
Understanding Familial hyperaldosteronism type II
It does not respond to glucocorticoid (steroid) treatment. People may have low potassium and low renin levels. It is usually seen in adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- High blood pressure (hypertension)
- Low renin in the blood
- A hormone-making growth in the adrenal gland
- Low potassium (hypokalemia) in some
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, hormone specialists and kidney specialists.
- 3Consider genetic testing
Changes in CLCN2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Primary Aldosteronism Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Primary Aldosteronism Foundation
- 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 Primary Aldosteronism 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
Changes in the CLCN2 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: familial adrenal adenoma; familial hyperaldosteronism type 2; fh ii; fh-ii; fh2
Patient organizations
- Primary Aldosteronism FoundationFamilial hyperaldosteronism type II · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial hyperaldosteronism type II.
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