Living with Congenital primary lymphedema of Gordon
A rare genetic condition with painless swelling in both lower legs from birth.
Understanding Congenital primary lymphedema of Gordon
Veins around the ankles and tops of the feet may be prominent, and toenails may be small and tilt upward. Some people have subtle facial differences, such as a high forehead and wide-set eyes. It is milder than the similar Milroy disease. Onset can be at a variety of ages.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these features:
- Painless swelling in both lower legs
- Prominent veins around the ankles and feet
- Small, upslanting toenails
- Subtle facial differences
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 genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in VEGFC 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
- 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
It is caused by changes in the VEGFC gene. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: vegfc-related congenital primary lymphedema
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 Congenital primary lymphedema of Gordon.
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