Living with Proteus-like syndrome
A condition with overgrowth of bones, skin, and other tissues that shares features with Proteus syndrome.
Understanding Proteus-like syndrome
Features can include overgrowth of the bones, skin, and other tissues, along with growths called hamartomas. It can also involve differences in the skin, blood vessels, and fat, and distinct facial features. GARD lists onset in the newborn or infant period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Overgrowth of bone
- Larger head size (macrocephaly)
- Intellectual disability
- One leg different in length or width from the other
- Skin patches (epidermal nevus) and uneven pigment
- Weak veins (venous insufficiency)
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 cancer specialists, eye disease specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in PTEN 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
- Cancer specialists (oncologists); Eye disease specialists (ophthalmologists); 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 PTEN Hamartoma Tumor Syndrome 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
About half of people with Proteus-like syndrome have changes in the PTEN gene. In those cases it is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: cohen-hayden syndrome; proteus like syndrome
Patient organizations
- PTEN Hamartoma Tumor Syndrome FoundationProteus-like syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Proteus-like syndrome.
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- Eligibility is confirmed by the study team
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