Living with POEMS syndrome
A rare condition that affects many body systems, including nerves, organs, hormones, blood cells and skin, mostly in adults.
Understanding POEMS syndrome
The name stands for polyneuropathy (nerve damage), organ enlargement, endocrine problems, a blood plasma cell disorder (monoclonal gammopathy) and skin changes. It usually appears in adults and older adults. Features include nerve damage that worsens, an enlarged liver, spleen or lymph nodes, hormone gland problems and darker skin.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Nerve disease in the arms and legs (polyneuropathy)
- Enlarged liver, spleen or lymph nodes
- Hormone gland problems
- Darkening of the skin and extra hair
- Fluid buildup (edema)
- Fatigue
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 blood and bone marrow specialists, brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Global Autoimmune Institute and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute, The Foundation for Peripheral Neuropathy
- 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
GARD says the underlying cause is not well understood.
Also known as: crow-fukase syndrome; osteosclerotic myeloma; pep syndrome; poems - polyneuropathy organomegaly endocrinopathy monoclonal and skin changes; polyneuropathy organomegaly endocrinopathy monoclonal gammopathy and skin changes; polyneuropathy-endocrinopathy-plasma cell dyscrasia syndrome
Patient organizations
- Autoimmune AssociationPOEMS syndrome · United States
- Global Autoimmune InstitutePOEMS syndrome · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with POEMS syndrome.
Explore research for POEMS syndrome
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Find actively recruiting studies for POEMS syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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