Overview
Lymphedema is a condition where the lymphatic system does not drain fluid properly, causing swelling — most often in the arms or legs. The lymphatic system is a network of vessels and nodes throughout your body that helps fight infection and remove excess fluid from tissues. When this system is blocked or damaged, or does not develop properly, fluid builds up under the skin, leading to noticeable and sometimes significant swelling. Lymphedema can be either primary (inherited or present from birth due to problems with how the lymphatic system developed) or secondary (caused by damage to the lymphatic system from surgery, radiation, infection, or injury). Primary lymphedema is considered a rare condition and may appear at birth, during puberty, or later in adulthood. The swelling usually starts in one limb but can affect both sides or other parts of the body. There is currently no cure for lymphedema, but treatments focus on reducing swelling and preventing complications. These include compression garments, specialized massage called manual lymphatic drainage, exercise programs, and careful skin care to prevent infections. In some cases, surgery may be considered. Early diagnosis and consistent management are key to maintaining quality of life and preventing the condition from worsening over time. Note: This Orphanet entry (79383) is marked as obsolete, meaning the classification may have been reorganized into more specific subtypes of lymphedema.
Key symptoms:
Swelling in one or both arms or legsFeeling of heaviness or tightness in the affected limbSkin that feels thicker or harder than normalDifficulty fitting into clothes or shoes on the affected sideReduced range of motion in the swollen limbRecurring skin infections (cellulitis) in the affected areaAching or discomfort in the swollen areaPitting of the skin when pressed (early stages)Skin changes such as thickening, hardening, or wart-like growthsLeaking of fluid through the skinFatigueDifficulty with daily activities due to limb heaviness
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
6 eventsM.D. Anderson Cancer Center — PHASE2
Biruni University — NA
Centre Hospitalier Universitaire de Nice — NA
Dharmais National Cancer Center Hospital — NA
Odense University Hospital — NA
Danish Breast Cancer Cooperative Group — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Lymphedema.
6 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Lymphedema.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: Lymphedema.
Community
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Start the conversation →Latest news about OBSOLETE: Lymphedema
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What type of lymphedema do I have — is it primary (genetic) or secondary?,Should I or my family members have genetic testing?,Can you refer me to a certified lymphedema therapist?,What compression garments do you recommend, and how do I get properly fitted?,What signs of infection should I watch for, and should I keep antibiotics at home?,Are there any surgical options that might help in my case?,Are there any clinical trials or new treatments I should know about?
Common questions about OBSOLETE: Lymphedema
What is OBSOLETE: Lymphedema?
Lymphedema is a condition where the lymphatic system does not drain fluid properly, causing swelling — most often in the arms or legs. The lymphatic system is a network of vessels and nodes throughout your body that helps fight infection and remove excess fluid from tissues. When this system is blocked or damaged, or does not develop properly, fluid builds up under the skin, leading to noticeable and sometimes significant swelling. Lymphedema can be either primary (inherited or present from birth due to problems with how the lymphatic system developed) or secondary (caused by damage to the ly
Are there clinical trials for OBSOLETE: Lymphedema?
Yes — 6 recruiting clinical trials are currently listed for OBSOLETE: Lymphedema on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.