The incidence of lymphedema (LE) is complicated since no specific American or global epidemiological study has ever been completed to date. The best we can do is make projections based on the references, listed below and with guidance from experts in the field such as Dr. Stanley Rockson. Using inferences from such sources as the World Health Organization’s booklet on lymphedema (see page 64 of the attached Wound and Lymphedema Management) which has projected that 1 in 30 people live with lymphedema worldwide and several European studies that attempt to quantify the incidence rates of secondary lymphedema associated with various cancers and other common conditions (i.e., European effort, LIMPRINT in Specialist Lymphedema Services in United Kingdom, France, Italy, and Turkey) the following estimates have been made: 

Up to 250 million people worldwide have lymphedema (LE) with an estimated 10 million living with lymphedema (LE)¹ in the United States, more than HIV², Parkinson’s³, multiple sclerosis⁴, muscular dystrophy⁵, and ALS⁶ combined. Normal structure and function of the lymphatic system can be altered by congenital diseases such as primary LE, lymphatic tumors, and malformations; or by trauma, cancer, radiation, or surgical injury resulting in secondary LE. Every day, children are born with incurable LDs, tumors, or malformations, leading to life-altering and sometimes fatal complications⁷. Up to 30% of breast cancer survivors acquire debilitating LE⁸, as are those treated for prostate⁹, ovarian¹⁰, head and neck cancers¹¹, and melanoma¹². US Veterans suffering trauma, injuries, infection¹³, or burn pit exposure are also at risk¹⁴.

LE&RN will continue to review the current literature and encourage efforts for further studies to provide the most up-to-date information.

1. Greene AK. Epidemiology and Morbidity of Lymphedema. In: Greene AK, Slavin SA, Brorson H, eds. Lymphedema: Presentation, Diagnosis, and Treatment. Cham: Springer International Publishing; 2015:33-44.

2. Prevention CfDCa. Estimated HIV incidence and prevalence in the United States, 2015–2019. HIV Surveillance Supplemental Report 2021;26(No. 1). http://www.cdc.gov/ Accessed: February 14, 2023.

3. Willis AW, Roberts E, Beck JC, et al. Incidence of Parkinson disease in North America. npj Parkinson's Disease 2022;8(1):170. DOI: 10.1038/s41531-022-00410-y.

4. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States. A population-based estimate using health claims data 2019;92(10):e1029-e1040. DOI: 10.1212/wnl.0000000000007035.

5. Zhang Y, Mann JR, James KA, et al. Duchenne and Becker Muscular Dystrophies' Prevalence in MD STARnet Surveillance Sites: An Examination of Racial and Ethnic Differences. Neuroepidemiology 2021;55(1):47-55. (In eng). DOI: 10.1159/000512647.

6. Mehta P, Raymond J, Punjani R, et al. Prevalence of amyotrophic lateral sclerosis in the United States using established and novel methodologies, 2017. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2023;24(1-2):108-116. DOI: 10.1080/21678421.2022.2059380.

7. Gallagher JR, Martini J, Carroll S, Small A, Teng J. Annual prevalence estimation of lymphatic malformation with a cutaneous component: observational study of a national representative sample of physicians. Orphanet journal of rare diseases 2022;17(1):192. (In eng). DOI: 10.1186/s13023-022-02336-3.

8. DiSipio T, Rye S, Newman B, Hayes S. Incidence of unilateral arm lymphoedema after breast cancer: a systematic review and meta-analysis. The Lancet Oncology 2013;14(6):500-15. (In eng). DOI: 10.1016/s1470-2045(13)70076-7.

9. Clinckaert A, Callens K, Cooreman A, et al. The Prevalence of Lower Limb and Genital Lymphedema after Prostate Cancer Treatment: A Systematic Review. Cancers (Basel) 2022;14(22) (In eng). DOI: 10.3390/cancers14225667.

10. Hayes SC, Janda M, Ward LC, et al. Lymphedema following gynecological cancer: Results from a prospective, longitudinal cohort study on prevalence, incidence and risk factors. Gynecol Oncol 2017;146(3):623-629. (In eng). DOI: 10.1016/j.ygyno.2017.06.004.

11. Fadhil M, Singh R, Havas T, Jacobson I. Systematic review of head and neck lymphedema assessment. Head Neck 2022;44(10):2301-2315. (In eng). DOI: 10.1002/hed.27136.

12. Arié A, Yamamoto T. Lymphedema secondary to melanoma treatments: diagnosis, evaluation, and treatments. Glob Health Med 2020;2(4):227-234. (In eng). DOI: 10.35772/ghm.2020.01022.

13. Melrose WD, Leggat PA. Acute Lymphatic Filariasis Infection in United States Armed Forces Personnel Deployed to the Pacific Area of Operations during World War II Provides Important Lessons for Today. Trop Med Infect Dis 2020;5(2) (In eng). DOI: 10.3390/tropicalmed5020063.

14. Society AC. Military Burn Pits and Cancer Risk. In: team ACSmae, ed. CHEMICALS and CANCER. www.cancer.org: American Cancer Society; 2022.