Despite affecting millions, lymphedema remains one of the least understood diseases and is now facing devastating federal research cuts. Deseret News investigates why, spotlighting voices from the LE&RN community.
Key Quotes
“I’ve never been so terrified, and I’ve been in a plane crash.”—Kirsten Fox, patient at a LE&RN Center of Excellence, recalling a lymphedema-related emergency
“Lymphedema profoundly affects my life.”—Col. Susan Fondy, LE&RN Ambassador
“When we pull back from research, it’s not just a matter of ignoring the needs of those people who have incurable lymphedema or the tens of thousands of children born with lymphatic malformations. It goes much further than that.”—William Repicci, LE&RN President and CEO
Key Takeaways
- Lymphedema was dropped from the 2025 Department of Defense Peer Reviewed Medical Research Program, leaving researchers unable to apply for critical grants. LE&RN continues the fight to get lymphedema and lymphatic diseases added back to the list.
- Lymphedema can lead to life-threatening infections like cellulitis, requiring emergency treatment.
- LE&RN Centers of Excellence provide gold-standard diagnosis, treatment, surgery, education, and interdisciplinary care—as exemplified by Dr. Fatma Tuncer from Huntsman Cancer Institute at the University of Utah.
- LE&RN’s cancer-related lymphedema site, visited by 500+ people daily, is at risk after the Chronic Disease Education and Awareness Program lost funding.