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 biggest headlines from the past couple months carefully curated to keep you in the lymphie loop.
Get yourself comfy and elevated — this post is a long one!
“Lab-Generated Lymph Nodes Connect to Lymphatic System in Mice”
Researchers have developed lab-generated lymph node–like organoids that, when transplanted into mice in place of lymph nodes that have been removed, drain fluid and connect to the animals’ original lymphatic plumbing.
“We developed these lympho-organoids that have acquired in vivo some of the features of endogenous lymph nodes,” says Andrea Brendolan, a researcher at the IRCCS San Raffaele Scientific Institute in Milan, Italy.
He says he hopes that one day the technology will be developed to the point that it could serve as a treatment for lymphedema in humans.
“Tackling Lymphedema: New Insights from MSK’s Dedicated Lab”
In this clinical update, the Babak Mehrara lab at Memorial Sloan Kettering Cancer Center provides an overview of lymphedema and its burden on patients, and insights from three of their most recently published papers on the cellular processes driving the disease.
The Babak Mehrara lab is a dedicated lymphedema research laboratory whose insights into the pathophysiology of lymphedema are providing targets for future treatment interventions to cure and prevent the disease.
“Lymphaticovenular anastomosis in the treatment of secondary lymphoedema of the legs after cancer treatment”
A recent study suggests that lymphaticovenular anastomosis (LVA) can offer both volumetric reduction and improvement in quality of life in selected patients with early stage lymphedema secondary to cancer.
“The boy was dying. Zebrafish helped save his life”
Researchers say the success of using precision medicine in treating a boy’s rare, complex genetic condition makes a compelling case for applying genetic techniques to lymphatic disorders, which strike about 1 in 4,000 newborns.
“First lymphedema summer camp in US brings families together”
Camp WatchMe – a camp with programming tailored specifically for children with lymphedema and their families – is the first summer camp of its kind in the United States.
“The kids that we have here, they have never met another child with lymphedema,” says lymphedema therapist and podcast host Betty Westbrook.
“In the case of this, they come here this weekend and these five kids are the only five kids they’ve seen with lymphedema in real life.”
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Check out today's podcast episode!! Many of you have asked about camp, so I put together my camp review just for YOU! I hope you take the advice from our campers featured on this episode, and join us next summer for Camp Watchme 2020!! . . . https://lymphedemapodcast.com/2019/07/29/episode-28-inaugural-camp-watchme-a-huge-success/ . . . #campwatchme #campwatchme2019 #lymphedemaawareness #pediatriclymphedema #primarylymphedema #secondarylymphedema #knowledgeispower
“UI student-designed bra for breast cancer patients receives cash prize”
A team of biomedical engineers and University of Iowa alumnae who designed a bra to help breast cancer survivors prevent lymphedema won a $10,000 prize that they will use to commercialize the garment.
“We know there’s a need for this,” says Genevieve Goelz. “Winning this award is bringing attention to a problem that’s so fixable, and this brings us one step closer to a solution.”
“Clues in brain’s waste system may help explain Alzheimer’s”
Research published in Nature reveals that a particular group of lymphatic vessels play a pivotal role in helping the brain dispose of waste. It also suggests that deterioration of these vessels through aging could contribute to neurodegenerative diseases, such as Alzheimer’s.
“Device can spot lymphedema early in breast cancer patients”
By using a noninvasive instrument called a bioimpedance spectroscopy device, doctors are able to measure fluid volume in body tissue and can detect early signs of lymphedema. This allows for treatment interventions before the condition develops further.
A recent study found that when researchers used a bioimpedance spectroscopy device after breast cancer surgery, the risk of lymphedema dropped by nearly 70%.
“Using a tape measure is just not as sensitive as the use of bioimpedance spectroscopy,” says Dr. Lauren Cassell, chief of breast surgery at Lenox Hill Hospital in New York City. (Dr. Cassell was not involved in the research.) “This study suggests that following these patients closely in the immediate postoperative period with bioimpedance spectroscopy may help us avoid significant lymphedema and its subsequent complications.”
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.
“Cameroon: Neglected Tropical Diseases – Over 1,000 Surgeries Conducted in Two Regions”
A five-year project to manage morbidity and prevent disability from neglected tropical diseases has concluded in Cameroon. Among the accomplishments of the program: over 1,000 surgeries were performed on people with elephantiasis, and 112 lymphedema cases were trained in self-care.
“New mental motivators project marks Mental Health Awareness Week”
International charity Lepra is calling for greater awareness about the high percentage of mental health issues that develop after people are diagnosed with leprosy or lymphatic filariasis.
“Lymphoedema Is A Disease Condition Not A Curse”
When we talk about the lack of awareness around lymphedema, we’re usually referring to misunderstanding from the medical community. But in some parts of the world, the misunderstanding is rooted in cultural or religious beliefs.
“University Startup’s Medical Device to Combat Elephantiasis”
Learn how a camera initially developed by Microsoft X-Box has been adapted to perform imaging scans on lymphedema patients living in remote areas around the world.
“Real sole: recycling project providing shoes for India’s children”
Greensole is teaming up with schools and colleges to distribute recycled footwear to children across India, where injuries are common and lead to infections such as hookworm and elephantiasis.
“Besides making footwear and distributing it, we are very proud of having set up a skill centre in Jharkhand, to train tribal women in recycling footwear,” says one of the founders, Shriyans Bhandari.
“Influence of seasonal variation on reported filarial attacks among people living with lymphedema in Ghana”
A study conducted in the Ahanta West District in Ghana shows the high frequency of filarial attacks during wet seasons may significantly impact productivity and possibly increase the economic burden of people living with filarial lymphedema.
“WHO sustains Lymphatic Filariasis treatments in over 500 local government areas across Nigeria”
The World Health Organization (WHO) is currently supporting the Nigerian Government to distribute medications to treat lymphatic filariasis across 520 Nigerian local government areas.
“I’m happy these drugs are being distributed in my hometown. No one deserves to suffer what I have suffered,” says Feisal Alhassan, who’s lived with lymphatic filariasis for 14 years.
“Even though I was told LF has no cure, it’s good to know one can at least prevent its progress if these drugs are taken early. I have also been told that for those like me who already have LF, taking these drugs will help prevent transmission of the disease to others.”
“Fight against elephantiasis almost won in Ghana”
While lack of awareness, unsafe health practices, close contact with infectious vectors and limited access to safe water and sanitation continue to present challenges, the Ghana Neglected Tropical Disease Programme has made good progress against elephantiasis.
“On the brink: Malawi’s fight against a crippling parasite”
A photo essay offers an intimate look at the people affected by lymphatic filariasis in Malawi:
“I sometimes feel like I’m the only one with this problem, people walking by always laugh at me,” says 48-year-old Loveness Pitala, a mother-of-six with lymphatic filariasis.
“Sometimes when I meet a group of people, they just stand there staring at my leg, asking if I’m cursed.”
Lymphatic filariasis is a devastating disease. But there’s good news on the horizon — Malawi is set to become the 2nd country in sub-Saharan Africa to eradicate it, preventing future generations from suffering life-limiting disabilities @MalawiGovt @LSTMnews @DFID_UK #NTD https://t.co/HWz6onvWAB
— Sarah Newey (@sneweyy) July 11, 2019
“Kamwenge: MP Calls For Urgent Intervention As 273 Battle Podoconiosis Disease”
Despite an increase in the number of patients with podoconiosis, the Ugandan government isn’t providing enough help, says Dorothy Azairwe Nsheijah, a Member of Parliament in Uganda’s Kamwenge district.
“They just give us pain killers but these people desire a lot of support. Some of them have lost their private parts; they can’t walk, they need wheelchairs.”
“Dose Poles Simplify Elephantiasis Treatment”
Community-focused ventures like the dose pole ensure communities in poverty-stricken nations are self-sustainable in combating neglected tropical diseases such as elephantiasis.
Colorfully marked with various heights and their corresponding dosage, the dose pole makes it easy for distributors and community health providers of various literacy levels to determine the amount of medication needed for each patient.
- Susan Lax, who developed lymphedema when 18 lymph nodes were removed during a previous round of cancer, is now facing another course of chemo: “I’m stubborn and I’m not ready to give up on life so I just do what I have to do.” (3CBS Philly)
- Hannah Geraghty is glad she underwent liposuction for her lipedema: “It feels weird to walk past a mirror to not see my calves trailing behind me. I don’t feel as obvious anymore, people treat you differently.” (Daily Mail)
- Caroline Costello feels let down by the lack of lymphedema services and awareness in her country: “I am not an affluent person – but I wasn’t willing to let my condition deteriorate any further and my family couldn’t bear to see me in pain.” (Irish Times)
- Connie Smith wants the government to recognize lipedema as a condition in the Medicare system: “I went to my doctor who initially told me I was too fat and they told me I would die if I didn’t lose weight.” (Warrnambool Standard)
- Will Potts was about to go on holiday when cellulitis stopped him in his tracks: “The pain was so bad that when I did manage to stand the surge of pain that followed felt like I had just put my entire left leg in a vat of boiling water.” (Manchester Evening News)
- Tiffany Howe becomes her own lymphedema advocate: “People get scared with this diagnosis, but you can accomplish a lot when you stay on top of it, research insurance and treatment options and keep advocating for yourself.” (Johns Hopkins Medicine)
- Lymphedema and lipedema advocate Sarah Bramblette shares her challenges as a patient with obesity: “I thought [the cardiologist] was trying to find a reason for my excess weight and made assumptions about my habits. I explained to her that I have other conditions which contribute to my weight. She only understood once she did her physical exam.” (Obesity Action Coalition)
- When Nola Young was diagnosed with lipedema, it was a bittersweet moment: “I cried all the way home. I knew that meant my sister had it as well, because we had similar legs. It is hereditary. I knew that I had my nan’s legs. Before I even got out of the surgery I knew that we all had it and what was wrong.” (9News)
- Local public health service offered to send Sandra Byrne’s son abroad for treatment, but Sandra wonders what’s the point: “There’s no treatment here to follow up with. It’s great over there but, when you come back to Ireland, you’re back to square one. After getting that hands-on treatment there’s nothing here. It’s a disgrace.” (Irish Times)
- Gaynor Leech of Lymph-What-Oedema was on a local radio show to discuss lymphedema and her own advocacy efforts: Listen on YouTube.
- In Najomtien, Thailand, local police have donated 7,000 baht for treatment of a toddler’s lymphedema: Surgery is planned, but his mother doesn’t have the money to pay for it. The police donation will help, but more is needed. (Thai Visa)
- Dr. Rohini Patil was recently recognized for her work with breast cancer awareness in India. Not only has she organized on-site screenings for early detection, but she also became certified in lymphedema therapy so as to help patients deal with the aftermath of breast cancer and its treatment. (Nagpur Today)
- In an effort to better manage her lipedema, Athena Porter has lost over 70 pounds in a year: “I am proud of myself for all the challenges I’ve overcome both mentally and physically; I love what I see in the mirror, even on my worst day because I know what it takes to be strong.” (Daily Mail)
- Karen Dannenhauer is preparing for her third surgery in a year to reduce the size of her legs, which have swelled during the past 30 years because of lymphedema: “I still make allowances for a big leg […]. Before, I always had to make sure I had room for my leg. Now, it’s just a leg. It’s not like another person I am dragging around.” (The Daily Journal)
- Jamila Coleman spent nearly four years watching the world through a window after a rare form of lymphedema caused her leg to balloon to 3ft-wide below the knee. Watch her video below: