There’s always something going on in the world of lymphedema and lymphatic research! It can be a lot to keep up with, so here’s a digest of some of the latest headlines from the past month carefully curated to keep you in the lymphie loop.
“SVS: Many lymphedema patients are not receiving treatment”
A new study finds that a significant percentage of cancer patients are not getting any care for their lymphedema, leading to a notable treatment gap.
While 94% of breast cancer patients get help for lymphedema, only 75% of prostate cancer patients with lymphedema are under treatment.
In addition to prostate surgery patients, patients with other conditions had lower lymphedema treatment rates: venous leg ulcers, 82%; melanoma, 82%; uterine cancer, 81%; ovarian cancer, 83%.
“Developments in Lymphedema Research”
Julie Pederson, BSW, RN, OCN, CBCN, provides an overview of developments in lymphedema research, from surgeries and anti-inflammatory treatment to ketogenic diet and exercise.
“Assessing, managing and monitoring clinical lymphedema”
Richard Carreon, the managing director and CEO of ImpediMed, offers a look at how technologies such as bioimpedance spectroscopy devices allow for earlier detection, proactive management, and prevention of cancer-related lymphedema.
“6 Things That Increase Your Risk of Cellulitis”
Included in this article’s list is chronic swelling. Lymphatic fluid is fertile ground for bacteria to thrive once it enters the skin and soft tissue. With lymphedema, the malfunction of the lymphatic system means it’s less able to fight infection and puts you at a higher risk for getting cellulitis.
“Axillary Radiotherapy Alternative to Lymph Node Dissection in Early-Stage Breast Cancer”
“The standard paradigm was that if the sentinel node is clean, or only contains minimal disease, then no further axillary surgery is indicated,” said lead investigator Emiel J. T. Rutgers, MD, PhD, in a press conference during the 2018 San Antonio Breast Cancer Symposium.
“If there is cancer, you would need to do complete axillary surgery, and this is associated with adverse events—predominantly lymphedema.”
Lymphatic filariasis news
Lymphatic filariasis (commonly known as elephantiasis) is a neglected tropical disease caused by parasitic infection to the lymphatic system. It is the leading cause of lymphedema worldwide: of the over 120 million people infected, 40 million are incapacitated or disfigured by the disease.
“Maternal filarial infection impacts childhood susceptibility to infection”
Pregnant women and children under the age of 2 are currently not eligible to be part of mass drug administration programs for lymphatic filariasis, yet research shows that children born to women who had the disease during pregnancy were more susceptible to filarial infection in childhood. How can mass drug administration programs take this into account?
“Elephantiasis patients left out in the cold”
Radio and electrical gadget repairman Ch. Ramamohan Rao is a grade-4 lymphatic filariasis patient in his late sixties. His disability is extreme, but he has to work due to lack of services and assistance from government programs.
“The LF-affected will be forced to beg if the government does not give them disability pension,” said Mr. Rao.
“A healthcare safety net for all”
When it comes to mass drug administration programs to combat lymphatic filariasis, medicine is not enough: people need to be educated on the disease itself.
“The Woman With The Giant Feet”
“I wish a doctor could operate on me, and then I might be more normal. I’d like to go to school as well. I’ve been stuck at home for too long.”
21-year-old Tawheeda was born with a condition that doctors believe is a form of elephantiasis, causing her legs and feet to swell to more than three times their normal size.
- You’re going to want to bookmark this helpful resource on advocating for yourself or a loved one in the doctor’s office. “Walking into a doctor’s office or hospital can be intimidating. But when you go armed with the right tools and frame of mind, you can walk out of that appointment or hospital stay feeling more confident and satisfied … Just having that knowledge in your pocket can help you feel better.” [The New York Times]
- Gil Smart developed lymphedema in his neck following treatment for HPV oral cancer. “I’ll have lymphedema for the rest of my life … I’m grateful for what the therapists have taught me.” [TC Palm]
- Lymphedema treatment starts with education. To best manage lymphedema, patients must first have an understanding of their disease, no matter what its type, according to Sherry Hite, an occupational therapy lead in the Department of Rehabilitation Services at City of Hope in Duarte, California. [Oncology Nursing News]
- Karen Dannenhauer prepares for her second surgery to treat her lymphedema. “My legs will both be the same size, and they won’t look unusual to people. It’s not like I’ll miss it, but it’s been my identity for so long that it’s really strange to have to, in a way, forge a new identity. I’m going to look like everyone else.” [Daily Journal]
- Read a follow-up article: While insurance covered her first lymphedema surgery, Dannenhauer isn’t sure if this one or the next will be covered. “If it isn’t covered, and I have normal legs, I would be more than happy to work years and years to pay it off. If I have to sell everything I own, it would be worth it.”
- Demand for a women’s health fund includes better coverage for lipedema patients in Scotland. “A dedicated women’s health fund would help identify appropriate specialist treatment paths and prevent complications including mobility problems, depression, and cellulitis,” says Dr Anne Williams, a trustee of Talk Lipoedema. [Herald Scotland]