Living with Lymphedema praecox
An inherited form of lymphedema, also called Meige disease, with leg and foot swelling that usually starts around puberty.
Understanding Lymphedema praecox
People usually develop swelling in the lower legs and feet during puberty. Some develop cellulitis, a non-contagious skin infection that can further damage lymph vessels. GARD says it is thought to be genetic because it tends to run in families.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swelling of the lower legs and feet
- Skin infection (cellulitis)
- Repeated bacterial skin infections
- Cobblestone-like thick skin
- Atypical scarring of skin
- Underdeveloped lymph nodes
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 EPHB4 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
Lymphatic Education and Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Lymphatic Education and Research Network
- 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 Lymphatic Education and Research Network 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
It is thought to be genetic, and the EPHB4 gene is listed. It appears to be inherited in an autosomal dominant way.
Also known as: hereditary lymphedema ii; hereditary lymphedema type ii; late-onset lymphedema; late-onset primary lymphedema; lmph2; lmphm5
Patient organizations
- Lymphatic Education and Research NetworkLymphedema praecox · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Lymphedema praecox.
Explore research for Lymphedema praecox
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- Recruiting studies from ClinicalTrials.gov
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- 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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