Living with Wiskott-Aldrich syndrome
A condition, mostly in males, that affects the immune system, causes eczema, and makes blood clot poorly.
Understanding Wiskott-Aldrich syndrome
It mainly affects males. Platelets (cells that help blood clot) are fewer and smaller than usual, from birth. This can cause easy bruising, bloody diarrhea, long bleeding after nosebleeds, and purple spots on the skin. White blood cell changes raise the risk of infections, autoimmune disorders, and some immune-system cancers.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Easy bruising
- Low platelet count
- Eczema
- Repeated infections
- Chronic diarrhea
- Autoimmune problems such as hemolytic anemia
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, blood and bone marrow specialists, cancer specialists and genetic specialists.
- 3Consider genetic testing
Changes in WAS 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
Immune Deficiency Foundation and Wiskott-Aldrich Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Immune Deficiency Foundation, Wiskott-Aldrich Foundation
- 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 Immune Deficiency Foundation 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
Wiskott-Aldrich syndrome is caused by changes in the WAS gene. GARD lists X-linked inheritance, which is why it mainly affects males.
Also known as: aldrich syndrome; eczema-thrombocytopenia-immunodeficiency syndrome; eczema, thrombocytopenia, immunodeficiency syndrome; immunodeficiency 2; immunodeficiency with thrombocytopenia and eczema; was
Patient organizations
- Immune Deficiency FoundationWiskott-Aldrich syndrome · United States
- Platelet Disorder Support AssociationWiskott-Aldrich syndrome · United States
- Wiskott-Aldrich FoundationWiskott-Aldrich syndrome · United States
- Jeffrey Modell FoundationWiskott-Aldrich syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Wiskott-Aldrich syndrome.
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