Transcript
LF is a major cause of lymphoedema in the world but it can also be a congenital lymphatic disorder, podoconiosis, secondary to cancer treatment or any other disruption to normal lymph flow. Regardless of the cause, lymphoedema happens because lymph flow is reduced or interrupted for a long time not because of an acute event that heals and recovers. Lymphedema is generally irreversible, however it can always be improved and if we can intervene early enough it can also be reversed. Infections can also be prevented, and mobility can be maintained. Best practise therapy is delivered in two phases with an intensive reduction phase to reverse as many changes as possible and a maintenance phase to prevent progression. The reduction phase should be repeated every year or so and it’s important to note that the same core elements of management are applied in both phases so if the reduction phase is unavailable the maintenance phase should still be applied. The exact therapy required is dependent on some fixed factors, in particular the stage and presentation of the lymphoedema. This is not a one size fits all disease and best practice changes according to the progression of tissue pathologies.

There are other challenges and opportunities which must also be considered in the context in which the intervention is being implemented and because there is no one size fits all treatment we need a multimodal approach, which poses additional challenges in LMIC settings but I think also presents some opportunities to draw on local resources and traditional practises.
One of the questions Linda asked me to address is why isn’t self-care practised? And the obvious answer here is a lack of significant funding, but the real cause is a historical view that lymphoedema is incurable and untreatable and you can’t really do much about it, and so it gets a very low clinical priority. Underlying this is a lack of scientific investigation which fortunately has started to accelerate in recent decades so we’re learning a lot, but getting that new knowledge into remote villages still has multiple challenges and it wasn’t hard to make a list of just some. Another big factor is patient expectation and unfortunately the more advanced the lymphoedema the less likely that you’re going to make any obvious reduction in size. We also need to have more ongoing reinforcements and support in place because everyone is going to suffer self-care fatigue, but if there are support systems routinely available within the community they can be encouraged to reengage with the programme. But we can’t even begin to address patient perception until we have a hard look at our own perceptions. While there is a perception at the planning and programme level that people can’t do certain things or that it’s too hard to implement them, then we are denying the people who have to live everyday with this disease the opportunity to adopt the most effective practise they can. So the first thing we need to do is increase our own understanding of lymphoedema and its treatment.

The videos in this section are from one of our virtual training of trainers lecture series, and I don’t have time to give you the in-depth version, but the main concepts are that every cell in your body is living in this nice warm water bath where the blood vessels are like the tap, always bringing in some nutrient rich fluid And the lymph system is like the drain removing anything harmful. This constant, one way flow through the connective tissue bath maintains the ideal environment for healthy cells. But the lymph system is not a passive drain, it is actively pumping the fluid along, creating a suction effect, that essentially vacuum cleans the connective tissues and keeps the bath water low, and is also responsible for creating all our fine body contours, which are evident that you lymph system is working. And one of the first things that is lost when the system starts to fail. Lymphatic pumping is crucial to the proper functioning of the immune system, particularly in barrier defences. 80% of all the lymph vessels in your body are located just a few millimetres under the skin where they immediately remove any invader that has crossed the barrier and transport them to the lymph nodes, which house the lymphoid tissue and mediated immune responses. The lymph vessels are arranged in long chains of pumping lymphangions which pass the lymph through multiple lymph nodes, before being returned to the venous circulation just above the heart.

When lymphatic clearance is inhibited, a high protein oedema appears distal to the cause and is confined to the subcutaneous compartment. Symptoms may be felt before any swelling is visible, but once clinically manifest this early fluid rich stage will return a deep rounded pit. All further tissue pathologies are caused by the presence of degrading proteins trapped in the tissue and gradually the fluid is replaced by fat and fibrous tissue growth. The lymph vessels themselves are affected and over time become fibrous and cease pumping. These late changes in connective tissue architecture are almost impossible to reverse and I cannot emphasise enough how important it is to include people with very mild disease in any intervention, as we have the potential to reverse all their symptoms so that they wont need lifelong lymphedema-care.

Pathogenesis of skin and connective tissue changes in lymphoedema is reasonably linear regardless of cause, the notable exception is podoconiosis where the expose is distal rather than proximal to the oedema. So we may need a slightly different approach in the early stages between these two causes, however if lymphoedema is allowed to progress then the connective tissue changes will be similar regardless of the cause, and the three main treatment outcomes which will apply in all cases. Firstly we want to turn down the tap and stop too much fluid coming into the tissue bath, and we can do this by managing comorbidities, especially ones that can cause venous hypertension, and by reducing the bacterial and fungal load on the skins. We also need to clear the drain and support the lymph system to recover as much function as possible and if skin and tissue changes have occurred then we want to reverse as many of them as possible.

To achieve these outcomes, the core elements of therapy are applied differently depending on which tissue pathologies are present. I'm not going to talk very much about skin care and hygiene because this is essential at all stages and the one thing that is being routinely implemented already. But we've got a long way to go before we're offering people the opportunity to adopt more comprehensive self-care, which will also include lymphatic exercises to support lymph flow, manual therapies to support lymphatic recovery, and compression therapies to reverse skin and connective tissue pathology. In early lymphoedema, walking is one of the best exercises to activate the proximal skeletal muscle pumps which support lymph flow and maintain mobility, light pressure lymphatic effleurage supports lymphatic function and provides the best opportunity for the system to recover completely. Light compression therapy will help reduce the tissue load and increase the chance of complete lymphatic recovery. Once lymphedema has progressed to the middle stages all hope of complete recovery is gone, and the main aim of treatment will be to prevent further progression. Lymphatic exercises to support lymph flow and clear the proximal parts of the system should be performed several times every day. Skin and tissue mobilisation are used to soften fibrotic tissue and lymphatic massage support lymph flow. If emollients are using during the massage this also help in preventing further skin pathology. If compression therapy can be applied, then some reversal in limb size can be achieved. In advanced stages lymphatic exercise should still be performed, even if walking is no longer possible, passively elevating all day is not enough. The manual therapies can make a big improvement in skin integrity, but compression is the only thing that will reduce limb size now. Elevation is also routinely prescribed, but it is important to understand that elevation does not assist the lymph system, rather if the affected body part is elevated above the heart, then venous resorption of free fluid is possible. So elevation is really only useful overnight when the limb can be elevated about the heart, and in the early stages when there is still free fluid to be resorbed. As lymphedema progresses there is little free fluid present and elevation becomes ineffective.

So what is needed to facilitate lymphoedema reduction? When we decide before we even start that we can't teach people full therapy we set ourselves for failure in terms of lymphedema reduction. So we need to find new ways to educate patients, caregivers and health workers in comprehensively lymphedema management. Sustainability will be a key feature of success, and this means that knowledge needs to be held locally, so that an individual programs can be tailored according to stage and presentation of the LO. Patients and their caregivers must to be empowered to make their own self care choices based on their individual circumstances, so they can maximise the benefits that can be achieve from the efforts they expend in daily lymphedema-care.

Linda also asked me to talk about my experiences in virtual training and you've been seeing some of my amateur attempts in producing virtual training tools which COVID forced us to make so we could continue to roll out the enhanced self-care protocol in Malawi, Nepal and Timor Leste. Although the CNTD work is essentially finished apart from some further follow-up in Malawi, we have formed a NFP in Australia to continue the work with the Bangladesh and Ethiopia partners
are we are currently redeveloping the demonstration videos using professional animators in each country. I'd also like to point that while we called our programme ‘enhanced care’ it was still not comprehensive lymphoedema care as we didn't introduce any compression therapies. We also only included moderate and severe cases, but it is important to note that LF and podoconiosis give us a unique opportunity to actually reverse lymphoedema in the early stages. Once the exposure has been removed, if we apply an intensive period of comprehensive lymphedema-care their lymphatic systems should be able to completely recover full function.

My final comment is that human beings are capable of finding creative ways to overcome obstacles and achieve complex tasks, and this is no less true for people affected by lymphedema than in any other context.
 

Thank you :)