Living with Polyglandular autoimmune syndrome, type 1
An inherited autoimmune condition, also called APECED, in which the immune system attacks hormone glands, often with yeast infections.
Understanding Polyglandular autoimmune syndrome, type 1
In autoimmune conditions the immune system mistakenly attacks the body's own tissues. Signs usually begin in childhood or adolescence. Three main features are long-lasting yeast (Candida) infections of the skin, nails and mouth, low parathyroid hormone (hypoparathyroidism), and adrenal gland insufficiency. Most people have at least two of these.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Long-lasting yeast infections (thrush)
- Low parathyroid hormone (hypoparathyroidism)
- Adrenal gland insufficiency
- Type 1 diabetes
- Early loss of ovary function (early menopause)
- Eye problems such as light sensitivity and cataracts
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 allergy and immune system specialists, cancer specialists, digestive system specialists and eye disease specialists.
- 3Consider genetic testing
Changes in AIRE 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
Autoimmune Association, National Adrenal Diseases Foundation and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Eye disease specialists (ophthalmologists)
- Expert care
- Expert lists: Autoimmune Association, National Adrenal Diseases Foundation, Global Autoimmune Institute
- 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 Autoimmune Association 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 AIRE gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: aire autoimmune polyendocrinopathy; apeced - autoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy; apeced syndrome; aps i; aps type 1; aps1
Patient organizations
- Autoimmune AssociationPolyglandular autoimmune syndrome, type 1 · United States
- National Adrenal Diseases FoundationPolyglandular autoimmune syndrome, type 1 · United States
- APS Type 1 FoundationPolyglandular autoimmune syndrome, type 1 · United States
- Global Autoimmune InstitutePolyglandular autoimmune syndrome, type 1 · United States
- Juvenile Diabetes Research Foundation InternationalPolyglandular autoimmune syndrome, type 1 · United States
- Pituitary Network AssociationPolyglandular autoimmune syndrome, type 1 · United States
- Jeffrey Modell FoundationPolyglandular autoimmune syndrome, type 1 · United States
- Resolve: The National Infertility AssociationInfertility · United States
You are more than your diagnosis
Perspectives from people navigating life with Polyglandular autoimmune syndrome, type 1.
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