Living with Nelson syndrome
A condition in which a pituitary gland tumor develops after both adrenal glands are removed to treat Cushing syndrome.
Understanding Nelson syndrome
Signs come from a pituitary gland tumor (adenoma) that makes ACTH, a hormone. The tumor can enlarge the bony pocket for the pituitary (sella turcica) and press on nearby structures. The skin becomes darker. GARD lists onset in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Darkening of the skin (hyperpigmentation)
- Too much ACTH hormone
- High blood pressure
- Vision loss
- Muscle weakness in the legs
- Stretch marks
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 and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Pituitary Network Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: Pituitary Network Association
- 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 Pituitary Network Association
- 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
It develops after bilateral adrenalectomy for Cushing syndrome, as a result of a pituitary tumor that makes ACTH.
Also known as: dermal ridges-off-the-end; nelson's syndrome; ridges-off-the-end syndrome; roes
Patient organizations
- Pituitary Network AssociationPituitary deficiencies · United States
Broader rare-disease groups
- 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 Nelson syndrome.
Explore research for Nelson syndrome
Explore actively recruiting Nelson syndrome studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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