Living with Sneddon syndrome
A rare condition that affects blood vessels, causing net-like skin patterns and problems in the brain.
Understanding Sneddon syndrome
It is mainly marked by livedo reticularis (a net-like pattern of skin discoloration) and nervous system problems. Symptoms may include mini-strokes and strokes, headache, dizziness, high blood pressure and heart disease. Reduced blood flow to the brain may cause memory loss, personality changes and reduced thinking ability. It usually starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Net-like skin discoloration (livedo)
- Strokes or mini-strokes
- Headache and dizziness
- High blood pressure
- Memory loss and thinking changes
- Brief vision loss in one eye
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, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in ADA2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists); 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 cause is often unknown, but it is sometimes linked to an autoimmune disease. Most cases occur without family history, though some families with autosomal dominant inheritance are reported. The ADA2 gene is listed.
Also known as: ehrmann sneddon syndrome; ehrmann-sneddon syndrome; idiopathic livedo reticularis with systemic involvement; livedo racemosa and cerebrovascular accident; livedo racemosa-cerebrovascular accident syndrome; livedo reticularis and cerebrovascular accident 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 Sneddon syndrome.
Explore research for Sneddon syndrome
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