.png)
Lymphoedema in the Global Village
From the suburbs of Australia to remote woredas in Ethiopia, lymphoedema is a chronic and often debilitating condition that affects millions of families worldwide.
Characterised by chronic swelling, poor wound healing and risk of infection, lymphoedema is a secondary skin disease caused by anything that affects proper lymph drainage from under the skin, including cancer therapies and genetic malformation.
Globally, lymphoedema from all causes is responsible for more physical disability than any other condition, and the greatest cause of lymphoedema is lymphatic filariasis (LF), a parasitic worm endemic in over 70 tropical countries.
Classified by the WHO as a neglected tropical disease (NTD) an estimated 16 million people suffer from LF-related lymphoedema.
Another neglected disease, podoconiosis, causes lymphoedema for a further 4 million people, primarily subsistence farmers in Africa and South Asia.
Caused by prolonged exposure to volcanic soils high in silica irritants which are absorbed by the skin of the feet, leading to chronic inflammatory processes. Over time the high inflammatory and silica loads damage to the lymph vessels trying to remove them from the affected areas.
The WHO recommends that wherever LF and podoconiosis are co-endemic, communities affected by podoconiosis be included in activities delivered under the Global Program to Eliminate Lymphatic Filariasis. However, lymphoedema everywhere has suffered from a low-clinical priority, including in wealthy countries.
Despite the overwhelming need for specialised care everywhere, access to effective lymphoedema management remains highly unequal.
Specialised compression therapy - one of the most essential components of treatment - is particularly difficult to access in communities where even basic healthcare resources are limited.
To address this gap, the Global Village Compression Working Party has been formed to connect health professionals with underserved communities in LF and podoconiosis endemic countries.
We invite passionate and creative individuals to join us over the next few years in this mission to deliver education and training in compression therapies to as many LF- and podoconiosis affected communities and families as possible!
The Need for Compression Therapy
Lymphoedema is a chronic and often debilitating condition with devasting effects on individuals, their families and communities. In many LF-endemic countries, a community-based model of home-care for lymphoedema has been shown to significantly improve quality of life by reducing secondary infections and slowing disease progression.
The WHO’s recommendations emphasise hygiene and wound care, which are effective in reducing episodes of acute infection – a primary cause of illness and disability, but not enough to visibly reduce limb size, even though a smaller limb is what most people with a disfiguring swelling pray for.
To reduce limb size as much as possible requires appropriate compression therapy, which is problematic in most LF and podoconiosis-endemic regions due to cost, availability, and lack of training.
Furthermore, incorrectly applied compression can lead to increased risk of infection and there are cultural, economic and geographical challenges and barriers to introducing complex therapies into communities where consistent access to basic resources such as soap or clean water may be lacking.
It is critical that any intervention is carefully designed to suit local needs and avoid unintended consequences.
The Bangladesh Experience: A Vision for Sustainable Compression
During 2018 & 19 I was extremely fortunate to be contracted as a consultant by the Liverpool School of Tropical Medicine within the Centre for NTDs, to design and implement a multi-county, multi-centre RCT on improving lymphoedema self-care.
Our studies in Bangladesh and Ethiopia showed that incorporating lymphatic stimulating techniques, such as deep breathing and self-massage into the existing WHO recommendations, led to clinically significant improvements in lymphoedema status among people affected by moderate to severe lymphoedema.
Since first visiting Bangladesh in 2018, I have maintained a personal and professional relationship with local individuals and organisations who continue to deliver and promote the ECS program. Given that Bangladesh has a thriving textile industry, we have long envisioned a sustainable model where compression garments could be manufactured locally.
However, compression therapy is not simply about providing garments. Without proper training in individualised fitting, incorrect use can worsen lymphoedema, reversing lymph flow rather than promoting it and leading to increased swelling and further complications.
Never-less, a handful of communities in north western Bangladesh from our original RCT have been practicing the ECS program routinely ever since. They, have achieved great improvements in the health of their skin, and eliminated the odour and illness that plagued them previously, enjoying the benefits of increased social inclusion and the opportunity to work, marry or go to school.
They also know that compression is needed to visibly reduce their swelling and make it less obvious, and they ask our in-country partners about it at every follow-up.
Yet, the practical challenges remain immense, and there is almost no in-country expertise to support the safe use of compression bandages or devices.
Well meaning clinics and medical companies sometimes try to send us used garments or expired medical stock, but these are not a viable solution, potentially causing harm, and almost certainly creating issues for local health staff who will be untrained in their use or risks.
Global Village Compression Working Party
In the six years since I was last in Bangladesh, we’ve established the LKN Foundation Ltd as an Australian Charity dedicated to delivering quality lymphoedema-care education and support to help people properly manage this complex disease.
On World Lymphoedema Day (March 6) 2025, we announced the Global Village Working Group, to connect Health Professionals from wealthy countries, with the people most in need of lymphoedema-care, in low-income countries.
It will likely take a few years to bring to fruition, but we are up for the challenge and understand the importance of taking the first tiny step.
Without any real physical or financial resources behind us yet, we'll need the support of medical and allied health professionals who either see themselves delivering workshops in an affected community, or have the capacity to support the project in other ways.
We invite lymphoedema practitioners who aspire to expand their clinical expertise beyond the treatment cubicle, to share what they know with populations who otherwise have no access to the specialist information and experience they can offer.
We invite enthusiastic recruits to join our Compression Working Party and help us take the first steps toward meeting this huge unmet need.
This interactive group will work together, sharing their expertise to develop a compression program that can be safely and effectively implemented in resource-limited settings. This initiative will involve:
Designing a culturally appropriate compression protocol incorporating context-appropriate education and training.
Working closely with the Ministry of Health and local NGOs to ensure the program is complementary to, and can be easily integrated with, existing public health policy and local health service infrastructure.
Identifying feasible compression solutions, including low-cost, locally manufactured options, or collecting donations from therapists, manufacturers and stockists.
Being guided by, and assessing our progress against key indicators for SDG 3, universal health care for all.
Providing hands-on training to local healthcare workers and affected persons to engender community ownership of evidence based knowledge and experience.
Establishing ongoing support networks to ensure that compression therapy is maintained over time.
This is an ambitious project, but we believe that with the right team of professionals, we can create a sustainable and scalable model for implementation into a diverse range of affected communities.
You do not need any direct experience with compression therapy or any medical expertise to support this project, and we welcome anyone with a passion for improving healthcare among neglected populations to join either the Working Party, or the Friends & Supporters Group.
Who Should Join?
Even if you don't see yourself in a village anytime soon, there are multiple ways to support and promote this project. We need enthusiastic and creative health professionals and other interested persons who:
have expertise or experience in lymphoedema management, or
an interest in chronic disease care, global health, or equitable healthcare delivery, or
can contribute as educators, researchers, or technical advisors, or
are able to travel to affected communities to deliver in-country therapy, or
can be available to provide remote support, or
are willing to provide background support for activities such as collecting donated supplies or organising fundraising events.
Why Your Support Matters
Too often, global health initiatives fail because they do not adequately consider the practical and cultural challenges of implementation. Our approach is experience-based and community-centred and will be guided by principles of sustainability.
We are committed to ensuring that this initiative meets the highest standards of clinical effectiveness while remaining feasible for local healthcare systems, doing our bit toward the Sustainable Development Goals.
Lymphoedema should not be a life sentence - together, we can make a difference.
This project will take time and dedication, but if you share our vision to extend your expertise beyond your clinic walls, you can be part of our collective dream to connect specialist lymphoedema services with families and communities, supported by evidence-based digital resources, shareable anywhere, anytime.
How to Get Involved
If you are interested in joining or supporting the Global Village Compression Working Party, please visit our website or contact us directly. Joining fees and subscriptions to the Global Village Working Group go to LKN and are tax deductible.
Let’s work together to bring compression therapy to the people who need it most.
References
Douglass J, et al. (2020). Effect of an Enhanced Self-Care Protocol on Lymphedema Status among People Affected by Moderate to Severe Lower-Limb Lymphedema in Bangladesh, a Cluster Randomized Controlled Trial. Journal of Clinical Medicine.
Douglass J, et al. (2020). Addition of Lymphatic Stimulating Self-Care Practices Reduces Acute Attacks among People Affected by Moderate and Severe Lower-Limb Lymphedema in Ethiopia, a Cluster Randomized Controlled Trial. Journal of Clinical Medicine.
WHO (2021). Lymphatic Filariasis: Key Facts.
WHO (2021). Podoconiosis: Key Facts.
Disclaimer. Jan Douglass is the Co-Founder and Chairperson of the LKN Foundation Ltd, and a Director of Moving Lymph Pty Ltd. LKN Foundation resources are currently hosted on the Moving Lymph Website until the LKN Open Access Platform can be constructed. Joining fess and subscriptions for the Global Village Groups go to LKN and are tax deductible.
🙏 Add your best self-care tips to the comments🫴🏼or 📍drop a 💙 if you support lymphoedema awareness!