Living with Nodular non-suppurative panniculitis
A rare group of skin conditions with tender, painful lumps under the skin, mostly on the legs and feet.
Understanding Nodular non-suppurative panniculitis
The lumps (subcutaneous nodules) are usually 1 to 2 centimeters across and most often affect the legs and feet. In most people it comes with fever, a general feeling of being unwell (malaise), muscle pain, or belly pain. GARD lists adult as the usual time of onset.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Firm lumps under the skin (subcutaneous nodules)
- Inflammation of fat tissue (panniculitis)
- Fever
- Muscle aches and joint pain
- Belly pain, nausea and vomiting
- Weight loss
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 skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- 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 Children's Skin Disease Foundation
- 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 exact cause of this condition is unknown.
Also known as: idiopathic lobular panniculitis; idiopathic nodular panniculitis; nodular non-suppurative febrile panniculitis; nodular nonsuppurative panniculitis; panniculitis nodular nonsuppurative; pfeiffer-weber-christian syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · 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 Nodular non-suppurative panniculitis.
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