More than 20 years ago during my first training in lymphoedema management, I learned about lymphatic filariasis (LF), and I knew straight away where I wanted to work. 15 years in the clinic and 8 years in research later - during which time I realised that the key to everything is prevention - I started on a PhD in Myanmar, and 5 years ago set my sights on bringing prevention strategies to people affected by lymphoedema in developing countries.
LF is transmitted by mosquitoes, so controlling spread of the disease is problematic when housing and drainage are substandard. Most LF endemic countries follow the WHO recommended mass drug administration (MDA) program, but this only kills the microfilariae, it doesn't help anyone whose lymph system is already damaged by mature worms.
Podoconiosis-related lymphoedema is caused by long term barefoot exposure to volcanic soils and is 100% preventable with proper footwear and internal flooring. But like insect screens and good drainage systems in LF endemics areas, shoes and covered floors are a rare and inaccessible commodity for people at risk of exposure to podoconiosis.
Both diseases are closely associated with poverty and any remedy offered must not add any burden to the community or families, and therefore should be oriented toward self-care.
The global program to eliminate lymphatic filariasis (GPELF) recommends a 'basic package' for lymphoedema self-care which is centred around a hygiene protocol for the affected body part. This is essential and effective in preventing secondary infections, which in these poorly resourced areas contributes the most to disability and loss of income.
Implementing lymphoedema self-care under GPELF requires that there be minimal out-of-pocket costs and that the activities are sustainable within local resources. So any protocol that we developed to bring what we know from BCRL to people affected by lymphoedema in Asia and Africa had to cost nothing and be easily integrated into daily life.
So we looked at the current program and noticed that what was missing was anything to really stimulate lymphatic activity. We now routinely offer our clients with BCRL - self-lymphatic massage, deep breathing exercises and progressive limb exercises as standard self-management. All of which could be added to the LF- and podoconiosis-oriented regimes without any added expense.
So we have tried it out. In Bangladesh and Ethiopia we taught people to do the deep breathing exercises and to massage their own legs and we have published the protocol in Methods and Protocols.
There are also some videos on my YouTube Channel for the lymphatic massage and deep breathing exercises.
One day LF transmission rates may be so low that we won't see any new cases, and one day people in rural Ethiopia will all have access to shoes and floor coverings, but for now we can expect that there will be new cases and existing cases for maybe decades to come.
At the very least the estimated 20 million people living with LF- or podoconiosis-related lymphoedema will need our research and support for several decades.
I hope we have developed a self-care protocol that will improve the lives of people who live day to day with lymphoedema. The result of our study will show if our enhanced-care program has greater benefit than what is currently recommended by the WHO. If you are interested in more details of the enhanced-care protocol you can read the published protocol here.