Lymphedema news

Research Roundup: Students are designing the future of lymphedema management

A summary of lymphedema and lymphatic research news from April 2019.

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.

“Florida Tech Project Takes Top Prize at Statewide Senior Design Showcase”

A group of biomedical engineering students designed a pneumatic compression device, earning them the People’s Choice Award at the second annual Florida-Wide Engineering Senior Design Invitational Spring 2019.Their project — called “Nixus” — is described as easy to put on and able to be worn continuously; it uses nickel-titanium actuators and nylon bands to create sequential compression from the ankle to knee to help facilitate lymphatic drainage. “Pressure sensors are placed between the device and the patient’s leg to ensure therapeutic and safe pressures,” according to the project description.

A few weeks earlier at the Northrop Grumman Engineering & Science Student Design Showcase, the Nixus team won the Northrup Grumman Best in Show Award for engineering and the Entrepreneurial Award, as well as the category award in Biomedical Engineering.

Congratulations to students Thomas Ward, Ariana Eichler, Samantha Schultz, and Daniel Mastellar for a job well done!


“A smart watch for lymphoedema management”

Remember Dicronis, mentioned in the February Research Roundup? The spin-off of ETH Zürich developed a device called “Lymphit” to aid in the early diagnosis of lymphedema.

The device itself is a tiny, transdermal patch of dissolving microneedles; the microneedles are long enough to penetrate the skin but short enough to avoid contact with dermal nerves. Once the microneedles dissolve and release a fluorescent dye, the patch is removed and an intelligent armband is applied and worn for about six hours. The armband monitors the uptake of the dye in the lymph vessels and transmits the data to the physician.

The Lymphit device can detect malfunction of the lymphatic system before any visible swelling develops, making it a promising diagnostic tool. It can also be useful for patients already undergoing treatment, as it allows doctors to monitor lymphatic function and determine whether the current treatment is successful or needs to be adjusted.

The entrepreneurs behind the concept — Laura Jabinet, Jovan Jancev, and Patrizia Marschalkova — are among the top three finalists for the Pionierpreis (Pioneer Prize), awarded by Zürcher Kantonalbank. They stand to win around 100,000 Swiss francs, which would be a huge assist as the team prepares to raise funds for clinical trials for Lymphit.

The team have won various awards for Lymphit already — here’s to hoping they win this one, too!


“Shoes for Lymphedema Patients Take Top Prize at EPICS in IEEE Challenge”

Twin sisters Cami and Nina Tran won first place in the 2018 EPICS in IEEE Challenge for their proposal to design 3D-printed shoes for people with lymphedema. The high school students received $6,500 to develop their project, and each was given a $2,000 college scholarship.

The sisters conducted research at Rome Memorial Hospital, talking with patients, doctors, nurses, and physical therapists to get a better understanding of lymphedema and the patients’ footwear needs. Their solution is to use a 3D printer to make stretchable shoes from elastic materials, likely including Velcro straps at the back of each shoe so that the wearer can adjust the shoe to accommodate changes in swelling throughout the day.

Cami and Nina plan to make prototypes in different sizes for the Rome Memorial patients. Congratulations and good luck, ladies!


“LIMPRINT: The UK Experience—Subjective Control of Swelling in Patients Attending Specialist Lymphedema Services”

A recently published study in the United Kingdom highlights the complexity of patients with lymphedema and the challenges associated with controlling chronic edema within specialist services due to sociodemographic and clinical comorbidities.

The findings were published in an open-access special issue of Lymphatic Research and Biology, a peer-reviewed online journal from Mary Anne Liebert, Inc., publishers. The accessibility of this data is “groundbreaking and should provide a much-needed paradigm shift,” says Stanley G. Rockson, MD, Editor-in-Chief of Lymphatic Research and Biology and Allan and Tina Neill Professor of Lymphatic Research and Medicine, Stanford University School of Medicine, CA.

“The nearly universal neglect of lymphedema has been both paradoxical and frustrating to patients and health care providers alike,” Rockson continues. “As the Editor-in- Chief, I am proud to have our journal serve as the publication medium for this important work.”


“Scientists Advance Creation of ‘Artificial Lymph Node’ to Fight Cancer, Other Diseases”

This isn’t necessarily lymphedema-related news, but it’s exciting lymphatic research news nonetheless.

In a proof-of-principle study in mice, scientists at Johns Hopkins Medicine report the creation of a specialized gel that acts like a lymph node to successfully activate and multiply cancer-fighting immune system T-cells.

Per the news release: “We believe that a T-cell’s environment is very important. Biology doesn’t occur on plastic dishes; it happens in tissues,” says John Hickey, a Ph.D. candidate in biomedical engineering at the Johns Hopkins University School of Medicine and first author of the study report.

See the T-cells interacting with the transparent gel:


“Surgeons master new techniques in AIMS”

Surgical treatment of lymphedema will soon be available to patients in India as surgeons gather at the Amrita Institute of Medical Sciences & Research Center to train in microsurgical techniques.

As is largely the global practice, the surgeons are trained first on live animals. There are very few animal labs in India where surgeons can practice new techniques on live animals before practicing on humans; AIMS is one of the leading animal lab research stations in the country, complete with magnetic resonance imaging, a catheterization laboratory, and micro–computed tomography.

The article quotes Dr. Subramania Iyer, head of plastic and reconstructive surgery at AIMS: “Surgeons are well-trained in cutting and suturing. So far, they used big instruments, but super microvascular surgery is very miniature. To move from a gross surgery to microsurgery is virtually impossible and needs training. Practicing the same on animals before doing it on human beings gives it a real feeling and ensures precision. The emphasis is on learning a new technique.”

The Amrita Institute was the first to offer training in robotic surgery to surgeons in 2016; now, they offer laparoscopic and super microvascular surgery techniques at their state-of-the-art lab.

Dr. K. P. Sreekumar, PhD coordinator of Central Animal Facility at the Institute, tells The Times of India: “We have all the necessary permissions from the government of India for animal research and training procedure. We ensure that every animal right is protected and welfare measures are maintained by following the ethical rules.”


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.

“A Tale of Two Parasites: How Loiasis Complicates Lymphatic Filariasis Elimination Efforts in Central Africa”

Elimination of lymphatic filariasis has lagged in Africa, due in part to a related parasitic infection called loiasis. A lab at Washington University in St. Louis is working to improve diagnostic tests for both.


“How Kenya’s Fight Against Elephantiasis is Becoming a Blueprint for Africa and the World”

Dr. Sultani Hadley Matendechero, head of the Kenyan Ministry of Health’s Neglected Tropical Diseases Unit, says the new triple drug therapy treatment for lymphatic filariasis is not just about science: “It is about what is possible with innovative thinking, international collaboration, and willingness to keep pushing forward.”


“Podo: The invisible tragedy”

Unlike the most common form of elephantiasis, Podoconiosis is not caused by injection of filarial worm larvae by a feeding mosquito host. Rather, it is caused by barefoot farming on certain types of ancient, red volcanic soil.

The lymphatic system in the feet and lower legs absorbs this soil and, effectively, commits slow suicide. Years of self-harm to the lymphatics in the legs and feet eventually results in full-blown elephantiasis and fibrosis. Those afflicted are often exiled to a life of shame, hopelessness, and pain.

PODO, a portrait series by photographer Matthew Joseph, spotlights the people living with podo in remote Southern Ethiopia in an attempt to bring awareness to the invisible tragedy. Be sure to check it out if you’re in London!


Compressed news

  • Lymphedema once caused Alison Mahoney’s leg to swell so much that she could barely wear shoes; now she is a marathon runner and competitive body-builder: “We have so much to offer in this world but we just happen to have this disease. I truly wish I had that kind of support when I was seventeen, I probably wouldn’t have felt so alone.” (Daily Mail)
  • Body-positive social media influencer Cara Cruz, also known as Pale Ginger Pear, shares her story: “I am a pale, freckled, tattooed, naturally redheaded mother who HAPPENS to have both Lipedema and Lymphedema, but they do not define who I am. My conditions don’t make me less of a mother, sister, girlfriend, friend, or employee.” (Inked Mag and Ladyhood Journey)
  • Amy Caterina is working to make a difference for lymphedema patients in her state of California and beyond: “I think there’s hope and we can increase awareness [of lymphedema] in general and in our communities and make it happen. We are lucky that we are allowed the opportunity to talk to our representatives to make sure they get the message. If we see a problem, we can try to fix it, we can act. I think that’s very encouraging.” (Del Mar Times)
  • “Lymphedema is a disease that is diagnosed through eliminating other potential causes, like a blood clot or heart problems”: Dawn Reiss describes what it’s like to have a disease no one — including physicians — understand. (Chicago Tribune)
  • A new genetic “score” can predict risk for obesity, according to new study: Sarah Bramblette, who has lipedema and lymphedema, says the stigma surrounding a person’s weight persists no matter the cause. Her hope is that more scientific discovery can further the conversation of obesity as a disease rather than a “willpower” problem. (WBUR)
  • Lymphedema doesn’t stop Dr. Ntokie Dambuza of Nelson Mandela University from reaching her running goals: “I will see a doctor when I have pain, but as long as I wear the compression stocking I am fine – I’m not going to stop running!” (Herald LIVE)
  • Heidi Kane, double cancer survivor and lymphedema patient, enjoys life after treatment: “If I didn’t have access to this program at Tripler Army Medical Center, I wouldn’t be able to move my arm. I was in so much pain because of the swelling in my elbow where I couldn’t carry anything; I couldn’t hold anything.” (DVIDS Hub)
  • Anne Race, who developed lymphedema after treatment for breast cancer, shares how she manages: “There’s no cure, no cure, so it’s something you have to live with, and I’ve lived with it for 23 years.” (KMTV 3 News Now)
  • A puppy with lymphedema finds his forever home: “People often shy away from dogs with special needs but it’s not always as it appears, in the right hands love can perform miracles,” says new owner Michael Swan. (Daily Mail)
  • Clodagh Moane was only diagnosed with lipedema in January, after spending 18 months trying to convince doctors the extra fat was not her fault: “A few of the doctors made really unprofessional comments about it as well. One said ‘you need to be honest about it, do you just like having a few pizzas?’ I was fuming.” (Daily Mail)
  • Hoping to make it a little easier for others dealing with the condition, Richelene Woolridge has created the Bermuda Lymphoedema Supportive Network: “Not everybody’s going to be affected by lymphoedema, but I think people need to be more aware and I want to help others through it. Lymphoedema is a never-ending journey, but it’s a manageable journey.” (Royal Gazette)
  • Ada Thompson’s lymphedema doesn’t stop her from dancing: “I’m grateful for my health and strength, I will say that. I have to accept the things I cannot change, and the things that I can change I need to strive to change […] it’s a struggle but you have to just toughen up, and get up and slay ’em, and keep going.” (Daily Mail)
  • Patients in Ireland are living without basic treatment: “It is hard to accept living permanently with this heavy and hot leg. Hopefully a greater selection of treatments, including surgeries, will become more available in the future,” says Caroline Costello. (Echo Live)

In Memoriam

This month, the lymphedema world lost an incredible advocate: Elaine Eigeman.

Elaine was Board Chair of the Lymphedema Advocacy Group and a driving force behind the Lymphedema Treatment Act. She lived with lymphedema for twenty years, having developed it as a result of bilateral breast cancer treatments in 1999.

Please take a moment to read her legacy letter, which she wrote before her passing. You can also continue her efforts by contributing to her fundraiser supporting the Lymphedema Treatment Act.

Here’s a delightful video of Elaine, surrounded by fellow advocates and friends, receiving special recognition at the Lymphedema Lobby Days 2018:

Rest in Peace, Elaine — you mean so much to so many. Thank you for all you have done for our community 💙

For more articles about lymphedema and lymphatic research, follow The Lymphie Life on Facebook and Twitter!

1 comment on “Research Roundup: Students are designing the future of lymphedema management

  1. Shout out from Union Square..hi all my fellow ‘Lymphie-warriors’..Hubby Ric, who has diabetes related LE, is doing quite well; our VA Hospital gave us the compression device. And with some lifestyle changes including better diet, and back to bike riding, etc.we are good to go. Speaking of go… Next week he will be traveling to New Orleans to visit family for three weeks – and begin the next phase of our move – next year. Here’s the rub: He cannot bring that compression device with him. Compact as it is, it is still bulky, not suitcase-friendly. Besides, with the leg wraps and cords, would never get past airport security, I am certain. Thinking caps, guys!!! I hope a genius med-science geek out there with an eye toward developing new LE self-care technologies can brainstorm a ‘portable compression device adapted for LE patients who travel’..a scaled down version that still (compactly!) does the job. We did this with oxygen tanks. Ok? And…look at the size of today’s cellphones. This is a do-able thing… NOLA has a wonderful new VA Hospital, so Ric will be well looked after away from NY. Plus my NOLA sister in law is a retired critical care nurse. All the same, Alexa…wouldn’t it be great if there were a state-of-the-art-device LE patients COULD bring along when traveling?

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