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 this past summer carefully curated to keep you in the lymphie loop.
“HMC Lymphedema Department featured in prestigious journal”
Hamad Medical Corporation’s Oncology & Lymphedema Physiotherapy Department’s work to protect the vulnerable during COVID-19 has been featured in Rehabilitation Oncology Journal: “Our experience suggests that a hybrid system of face-to-face and tele/virtual consultations may provide an opportunity to improve accessibility to lymphedema care and reduce waiting time and may thereby become a sustainable model of care even after the pandemic,” says Noora Al Mudakha, Chief of Physiotherapy.
“Orthocell (ASX:OCC) has breakthrough tissue engineering study published in US”
Regenerative medicine company Orthocell recently published a breakthrough tissue engineering study in PNAS. The study looked at combining Orthocell’s CelGro, a collagen membrane for regeneration procedures, with lymphatic and blood vessel cells to create functional lymphatic tissue.
“This study provides a new understanding of the role of CelGro in fabrication of tissue grafts for lymphatic vessel regeneration, which could have significant implications for a novel and effective surgical treatment of lymphedema,” Orthocell Chief Scientific Officer, Professor Minghao Zheng said.
“King Edward VII’s new approach reduces damaging side effects of breast cancer surgeries”
Independent charitable hospital King Edward VII’s, based in Harley Street Medical Area, is incorporating new innovations to combat some of the damaging long-term side effects of breast cancer surgeries.
The lymphatic microsurgical healing approach (LYMPHA) redirects waste products from the lymphatic system into the veins. The technique has been demonstrated in several studies to significantly reduce the risk of breast cancer-related lymphedema.
“Technion scientists have produced an engineered lymph vessel network”
Scientists at Technion have managed to grow an engineered human lymphatic vessel network, according to a press release. This development could lead to a better understanding of lymphatic vessel generation, which could have implications for the treatment of lymphedema.
“Deletion of single gene promotes growth of functional lymphatic valves”
A new preclinical study published in the Journal of Clinical Investigation indicates that targeting the gene Foxo1 may offer an early treatment approach for hereditary lymphedema.
“The later fibrosis stage of lymphedema cannot be massaged away,” said study principal investigator Ying Yang, PhD, assistant professor of molecular pharmacology and physiology at the University of South Florida Health Morsani College of Medicine. “Targeting lymph valves early in the disease is one critical aspect in identifying an effective treatment for lymphedema. If the disease progresses too far, it’s difficult to reverse.”
“Senators Gillibrand and Feinstein champion lymphatic disease (LD) inclusion in DOD research fund”
“We applaud the recent action of Senators Kirsten Gillibrand and Senator Dianne Feinstein and are hopeful that significant funding could become available to lymphatic researchers as a result,” said William Repicci, the President & CEO of Lymphatic Education & Research Network.
“This letter from the Senators represents significant progress toward the better future that we envision for all those living with lymphedema and other lymphatic diseases.”
“U of A appoints new Kipnes chair in lymphatic disorders, paving the way for research to begin”
The University of Alberta has named Dr. Spencer Gibson as the new Dianne and Irving Kipnes Chair in Lymphatic Disorders.
As the inaugural chair, Gibson will head research to support the care of patients suffering under-reported, under-recognized, and under-diagnosed medical problems in the lymphatic system such as lymphedema.
“What spoke to me about [the role] was the ability to create a multidisciplinary team of researchers to tackle a problem that has been under-investigated in the past,” Gibson said. “It’s, I would say, about 10 years behind other diseases like cancer. So, this is an opportunity to create something new.”
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.
“SMC’s work on curbing filariasis can be model for the country, finds study”
A study published in the BMC journal Infectious Diseases of Poverty finds that the implementation of the elimination of lymphatic filariasis program by Surat Municipal Corporation can become a model to develop guidelines and strategies to curb other diseases and infections in urban Indian settings.
“Imidido Or Podoconiosis, New Hope For Sufferers”
Through organizations like Heart and Sole Africa, sufferers of neglected tropical diseases are able to receive treatment: “It is a free treatment. But still, victims don’t come for medication because of stigma,” says clinic coordinator Marie Jose Dukuzimana.
“To get these patients, we conduct campaigns in churches, schools, and other public places.”
“To Improve Global Health Security, We Must Not Abandon Tackling Existing Epidemics”
Neglected tropical diseases (NTDs) like blinding trachoma, leprosy, intestinal worms, and elephantiasis are preventable and treatable, yet they still affect 1.7 billion people around the world.
Over 600 million people in Africa require treatment for an NTD, making up 35% of the global burden. Across the continent, 12 countries are on track to eliminate an NTD in the next three years – an extraordinary feat based on years of necessary action. But the UK government’s recent exit from supporting NTD programs, particularly during a pandemic, undermines years of progress and will deeply impact millions of Africans.
“BU Students’ Hackathon-Winning Project Could Help Combat a Neglected Tropical Disease”
“Spread truth, not disease”: Four Boston University students create a pill pack designed to combat misinformation surrounding lymphatic filariasis—and help prevent the disease.
For their concept, the team won $500 apiece and the opportunity to virtually present their winning project to neglected tropical disease experts at the Coalition for Operational Research on Neglected Tropical Diseases annual conference in November.
“138m Nigerians at risk of lymphatic disease – Expert”
No fewer than 138 million Nigerians are at risk of lymphatic filariasis (LF) and if not addressed, may develop elephantiasis, says Emmanuel Davies, the Deputy Director/Programme Manager of the National LF Elimination Programme, Federal Ministry of Health Nigeria.
He said there was need for mass administration of medicines of the at-risk population area in Nigeria: “Morbidity Management and Disability Prevention (MMDP) must be activated in states to ensure affected persons have basic healthcare, we must guide against mosquito bite.”
“Gates Foundation working with Centre to eliminate elephantiasis through triple drug therapy”
The Bill and Melinda Gates Foundation is working with the Indian government to accelerate the elimination of lymphatic filariasis, commonly known as elephantiasis, through the nationwide roll-out of a triple-drug therapy.
Dr. Helen Jamet, Deputy Director, Vector Control, Malaria at Bill & Melinda Gates Foundation, said that the National Vector Borne Disease Control Programme and the State governments are scaling up the program with increased resources. “Screening and surveillance are the key to preventing reintroduction of lymphatic filariasis infection in large urban areas which provide ideal breeding sites for the vectors.”
“Why it’s hard to end elephantiasis, a debilitating disease spread by mosquitoes”
Barriers to eradication of elephantiasis are not straightforward. Research and interventions have been overwhelmingly biomedical, focusing largely on mass drug administration (ivermectin, albendazole, diethycarbarmazine). Drugs work by killing the larval stages of the parasites. However, these drugs can only save a person from disfigurement if they are taken early and regularly.
Placing the illness in the context of the local culture is still a major challenge for health practitioners. Gender dynamics can also be an important factor in seeking treatment.
- Mum, 29, with abnormally large legs due to chronic illness refused liposuction by NHS: “Early diagnosis [of lipedema] is so important, not necessarily for us but for the next generation,” says Zoe Pearce. “It is a chronic illness and it’s debilitating, it doesn’t have to progress but we need all the awareness as possible.” (Mirror)
- Yuma mom spreading awareness about her daughter’s primary lymphedema diagnosis: “There needs to be more out there for these people,” says Lita Trujillo, whose daughter Aryanna was diagnosed with primary lymphedema as a baby. “Lymphedema is so in the dark and it affects so many more people than anybody thinks.” (KYMA)
- Best Life: Device detects early signs of lymphedema: “I never cried from diagnosis till end of chemo. But I came very close the day they told me I had lymphedema,” says Kathy Lahr, who was diagnosed with breast cancer and later ovarian cancer. Fortunately, her doctor caught it early using SOZO device. (Action News 5)
- King calls Dr. Darling a Miracle Worker: Lymphedema and lipedema patient Rhonda King calls Dr. Scott Darling her “miracle worker” after procedures he conducted changed her life: “Compare how I lived then to how I live now and you are talking about two totally different things.” (The Marshall Democrat-News)
- Willerby surgeon treating little-known ‘fat’ disease that’s ruining women’s lives: The NHS withdrew funding for surgery for lipoedema in 2016 – yet former NHS surgeon Vasu Karri was so convinced by the need for help for women that he opened his own practice to treat it, The Karri Clinic in Willerby: “I saw the effect this disease had on women and thought ‘this is something I want to do’.” (Hull Live)
- Collegeville woman benefits from new technology at Main Line Health: “One of the most feared outcomes of the diagnosis of breast cancer is the need for chemotherapy, but after we do all the treatment for breast cancer, patients are very concerned about the development of lymphedema,” says Dr. Bill Carter of Main Line Health. (The Mercury)
- Mum’s lifelong battle with ‘fat disease’ that left her suicidal: “I am not sure if the NHS will ever start funding treatment for lipoedema, but I do hope so,” says Emma Collins. “I could cry when I think about having surgery and normal legs … It would mean everything to me, it would be life-changing.” (Hull Live)
- Lymphoedema support group returns after COVID-19 restrictions: The Lymphoedema Support Group of New South Wales, a Sutherland Shire-based support group for people with lymphoedema, is resuming in-person meetings for the first time in more than a year. (St George & Sutherland Shire Leader)
- Woman trolled for condition that caused ‘elephant legs’ spends £10k on surgery: “I didn’t like to go to social events because I didn’t want to show my legs … I couldn’t even manage at work,” says Yasmina Kemppainen. After surgery, she says: “I feel strong. I feel confident. Lipoedema doesn’t control my life anymore.” (Daily Star)
- Reservist Tackles Trio of Responsibilities: When she’s not supporting the Navy in a reserve status, Petty Officer Second Class Meghan McWain is part of a research team at McGovern Medical School’s Institution of Molecular Medicine. In her lab, she conducts breast cancer research, specifically working with patients who develop lymphedema after surgery and/or radiation. (DVIDS)
- Lipoedema diagnosis for Carla Daly changed her life after years of pain and shame: At 55, Carla Daly was finally diagnosed with lipoedema: “I felt like the shame had been lifted off my shoulders.” Frustrated she had to wait so long for a diagnosis, Daly is on a mission to make sure others don’t have the same experience. (ABC News)
- One of the most little-understood chronic diseases: Halifax women living with lipedema hope to raise awareness: “I think we tend to not deal with those diseases as much as we do with others like cancer or heart issues,” says Jennifer Corson, who has lipedema. “It’s one of the many women’s issues that needs to be brought to the forefront.” (SaltWire)
- Mystery Cases: What Happens When Modern Medicine Lacks a Diagnosis or Cure? “You grow up feeling like, ‘I’m in this all by myself, no one really understands me,’ ” says Angela Moon, who has lymphedema. For patients like her, the Undiagnosed Diseases Network offers hope for treatment, but also for finally being seen. (Discover Magazine)
- Wayne County Wanderings: Marty Ryan talks about his long battle with lymphedema: Marty Ryan has been battling lymphedema for nearly 20 years: “I don’t want anyone to feel bad for me, but I do hope people will read this story and learn a little bit about lymphedema. Who knows? Maybe it will even help somebody out there.” (Tri-County Independent)
- ‘An ongoing nightmare’: People with obesity face major obstacles when seeking medical care: Sarah Bramblette has lymphedema and lipedema. Both disorders predominantly affect women, are difficult to diagnose and often lead to very large bodies that don’t respond to bariatric surgery or changes in diet or exercise. Bramblette said she’s battled for years to get good medical care despite her size. (NBC News)
- Two breast cancer survivors in Al Ain go on to beat lymphedema: “Thanks to the holistic efforts of the medical and physiotherapy teams at Tawam Hospital, I have now regained movement in my arm, can drive again, and today live a normal life,” says breast cancer survivor Fatima Al Kaabi. (Gulf News)
- ‘My cancer treatment was a walk in the park compared to this’: “You take it for granted in the morning that you can put on your shoes and go for a run, go to work and you don’t even think about your legs,” says Leona Kieran, who developed lymphedema after cervical cancer. “All I think about now is my leg and how it feels.” (Meath Chronicle)
- After breast cancer, Stacy Skinner learns to manage lymphedema with therapy: “Lymphedema therapy has been a true education. It has given me tools to manage my condition, many of which are tenets of a healthy lifestyle, including mindful nutrition and skin care,” shared Stacy Skinner. (Tallahassee Democrat)
- India’s National Plastic Surgery Day gets global acceptance: Plastic surgeon S. Raja Sabapathy says National Plastic Surgery Day was created to spread awareness of areas where plastic surgeons can play a great role but are often missed due to lack of awareness, such as surgical treatment of lymphedema. (The Hindu)
- Sakra World Hospital sets up lymphedema care centre: With an aim to provide comprehensive medical treatment to patients suffering from lymphedema and help them restore and improve their quality of life, Sakra World Hospital has launched a Comprehensive Lymphedema Care Centre. (The Hans India)
- Thousands of women with ‘tree-trunk’ legs caused by disabling lipoedema condition may be given liposuction on the NHS: Specialist nurse Mary Warrilow of Lipoedema UK said: “I’ve seen first-hand how transformative liposuction is – nothing else comes close […] At the moment, it’s relatively few who can afford to have liposuction. I know of women who have remortgaged their houses they’re so desperate. If it was available on the NHS, it would make such a difference to so many lives.” (Daily Mail)
- Lincs woman with fat-storage condition says new NHS surgery could ‘change her life’: Tess Sanderson says her life would “open up again” if she was able to receive non-cosmetic liposuction on the NHS to treat her lipoedema: “I want to be part of things.” (Lincolnshire Live)
- ‘It messes with you mentally’: the fear, swelling and stress of life with lymphoedema: Five weeks after being diagnosed with cervical cancer, Corinne Singleton was declared to be in remission. Little did she know that her health challenges were far from over. “To be honest,” says Singleton, “the cancer was a breeze compared with the lymphoedema.” (The Guardian)
- Former UMD gymnast battling rare disease plans multiple surgeries to combat illness: Alexandra Robinson hopes the lymph node transfer surgery will help her manage her lymphedema for the rest of her life: “I wish that insurance companies realized the impact that these surgeries have on people and make it more accessible to those who really need it.” (Fox 5 DC)
- Life with Lipoedema: campaigners call for more help on the NHS for painful condition: “The medical profession is not looking for a medical condition,” says Sharie Fetzer from Lipoedema UK. “They just see someone who seems to have a problem with diet and appearance when they should be looking at this as a chronic condition… that can cause serious disabilities.” (ITV News Granada)
- Lymphoedema: the possible side effect of breast cancer surgery and radiation therapy that no one mentions: “Nobody told me about lymphoedema,” says Niru Vishwanath. “The swelling, heaviness, stiffness, and pain – and restricted range of motion – was scary because I had no idea how to take care of the problem or whether it needed serious intervention.” (South China Morning Post)
- HealthWatch: Firefly Lights Up Lymph Nodes: As many as 65,000 women will be diagnosed this year with endometrial cancer, cancer that develops in the lining of the uterus. Now, a new technique during surgery, known as Firefly, is helping women recover with a lower risk of complications like lymphedema. (WFRV Local 5)
- ‘I’m condemned to live with these legs’: The disabled women being denied NHS fat-removal for lipoedema: “I’m condemned to living a half life with these legs,” states Lorna Taggart. “It is like dragging an additional two people around all the time.” (The i Paper)
- Courage Award Winner Heidi Hooper: Heidi Hooper, a cancer survivor with lymphedema, received a Courage Award for her unique art, which she meticulously crafts using tweezers and dryer lint. (BRC 13)
- Life-altering lymphoedema surgery brought to SA: “I am in love with my new arm. It is so much better. It is giving me hope, so much hope, and other people who suffer from this also need to know that there is hope,” says Karen Jackson, who recently underwent debulking surgery to treat her secondary lymphedema. (Daily Maverick)
- Aspiring Model With Lymphedema “Vows” To Never Amputate 100lb Leg Despite Negativity From Online Trolls: “As a child I never felt pretty, I used to think God had cursed me,” said Mahogany Geter of her lymphedema. “Then I decided that I was given this condition because I am emotionally strong and I can handle it. Since then I have been learning to accept and celebrate myself.” (Madame Noire)
- Woman born 34inch thighs now models for brands showing them off: “Instagram is how I found out about lipedema,” says Heather Johnson. “I was happy to figure out that I wasn’t crazy in the thought that my body was different from other people’s, it was like a relief to know that all these things were connected and had a name.” (Daily Mail)
- ‘Painful’ reason Queensland woman couldn’t lose weight: During her first appointment with a specialist, Charlotte Phelps described the symptoms she had told other doctors for years – and was diagnosed with early stage three lipoedema: “It was very overwhelming,” she said. “The first month I just cried, because it’s nice to have an answer that it wasn’t me.” (NT News)
- Lymphoedema: ‘I Risked My Mobility To Start a Family’: “Most people I speak to or even my friends, don’t quite have an understanding of how much it affects your life,” says Madeleine about her lymphedema. “The constant state of discomfort you’re in or how it makes day-to-day activities hard – you can’t concentrate as you can’t sit at your desk for long, but you can’t stand all day either.” (Women’s Health Australia)
- Kentucky CancerLink working to relieve burdens cancer patients may experience: Last November, Youlanda Chisley was diagnosed with stage three ductal breast cancer. She had chemotherapy, a double mastectomy, and eventually radiation. But there was something else Chisley and many other breast cancer patients face: lymphedema. (WKYT)
- People Call Me ‘Fat’ – But I’m Proud Of My Lymphedema: “It’s important for me to raise awareness for lipedema because I want women to know what they’re going through and why their body looks the way it does, and to get treatment sooner,” says Theresa, who has lipo-lymphedema. (Truly)