Living with Cobb syndrome
A rare condition with blood vessel malformations in the skin, muscle, bone, and spinal cord in the same body segment.
Understanding Cobb syndrome
The lesions are venous or arteriovenous (involving veins and arteries). They can involve one or many of the 31 spinal segments. Only 16% of the spinal cord lesions are multiple and clearly follow a segment pattern. GARD lists onset at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blood vessel malformations (arteriovenous)
- Spinal cord and spine differences
- Bone pain
- Fatty skin lumps (cutaneous angiolipomas)
- Nerve damage affecting feeling
- Tiredness and increased reflexes
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 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.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); 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 doesn't describe a cause for this condition yet.
Also known as: cobb's syndrome; cutaneomeningospinal angiomatosis; sams 1-31; spinal arteriovenous metameric 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 Cobb syndrome.
Explore research for Cobb syndrome
Explore actively recruiting Cobb syndrome studies with HealthSpark.
Find actively recruiting studies for Cobb 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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