Living with Fasciitis with eosinophilia syndrome
A very rare condition in which the layer under the skin swells and thickens, often causing swelling in the hands, arms, legs and feet.
Understanding Fasciitis with eosinophilia syndrome
Swelling can happen quickly in the hands, arms, legs, and feet. A type of white blood cell called eosinophils builds up in the affected tissue. It looks like scleroderma, but internal organs are usually not involved. It is listed as starting in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swelling (edema) in hands, arms, legs and feet
- Joint pain and arthritis
- Muscle aches
- Tiredness (fatigue)
- High eosinophil count in the blood
- Firm lumps under the skin
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 autoimmune and inflammatory disease specialists, brain and nervous system specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Partnership For Eosinophilic Disorders, Autoimmune Association and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: American Partnership For Eosinophilic Disorders, Autoimmune Association, 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 American Partnership For Eosinophilic Disorders 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
The exact cause is unknown.
Also known as: diffuse fasciitis with eosinophilia; eosinophilic fasciitis; eosinophilic fasciitis (disease); shulman syndrome; shulman's syndrome
Patient organizations
- American Partnership For Eosinophilic DisordersFasciitis with eosinophilia syndrome · United States
- Autoimmune AssociationFasciitis with eosinophilia syndrome · United States
- Global Autoimmune InstituteFasciitis with eosinophilia syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Fasciitis with eosinophilia syndrome.
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