The British Lymphology Society (BLS) awareness campaign for 2020 is EveryBodyCan. This exciting initiative aims to encourage those with, or at risk of, lymphoedema to be more active. The campaign will provide advice, tips, suggestions and useful links that health professionals can use to support their patients in overcoming anxieties about activity in general or in relation to any specific activities. Recognising that individuals with lymphoedema may have physical limitations, the campaign is all about showing that there are many options to suit different levels of fitness, and so everybody can do something to help their lymphatic system work more effectively, be actively involved in managing their lymphoedema and reduce the risk of complications. This article explains the reasons behind the campaign and describes some of the activities planned and how people can get involved.
Spreading the message about lymphoedema via the campaign
Lymphoedema most commonly affects the limbs, but it may also affect midline structures, such as the head and neck, trunk, breasts and genitalia. It is more common than is generally realised, affecting between 20 000 and 429 000 people in the UK, including children (National Lymphoedema Partnership, 2019). The higher, more recent figure exceeds the number of people in the UK affected by multiple sclerosis, Parkinson's disease, motor neurone disease and HIV, all put together. Thus, the burden of lymphoedema in the UK is significant.
Many key organisations are partners in the EveryBodyCan campaign (Box 1), and many more have pledged active support so that key messages about lymphoedema and the importance of activity may be disseminated much more widely via their members and social media followers. This is important, as many people with lymphoedema (also referred to as chronic oedema), and a wider audience of individuals at risk because of other pathologies, are under the care of health professionals who are not lymphoedema specialists.
Why being active is important
The lymphatic system is responsible for the collection of fluid and particles from tissue spaces. The particles collected include: enzymes; hormones; fat cells; waste products of cellular metabolism, such as used proteins; dead, dying or mutant cells, such as aged or cancer cells; and live bacteria as well as those that have been neutralised by macrophages. In a healthy individual with a fully functioning lymphatic system, the lymph, comprising the fluid and particles, is then transported through the lymphatic vessels via several lymph nodes. Within the nodes, lymph is filtered and the toxins within it neutralised before onward transit, via the major lymphatic ducts in the upper chest/clavicular area, to the circulatory system for excretion.
The tiny lymphatic capillaries that collect the interstitial fluid and particles have no muscle, but as they are attached to surrounding structures, such as muscles and skin, by fine filaments, any movement of those structures opens up gaps, permitting entry of fluid and particles. Once the lymphatic capillaries fill, a slight peristaltic movement is stimulated, which is enhanced by surrounding muscle activity. Therefore, both entry of fluid and particles into the system and onward movement rely largely on movement and muscle activity to work effectively. This is aided by changes in pressure within the abdominal and thoracic cavities, such as those that occur with different types of deep breathing (Shields, 1980).
Awareness of how the lymphatic system works helps people understand why lymphoedema—a failure of the lymphatic system—results in swelling, skin and tissue changes and a predisposition to infection. It also makes sense of the importance of movement and activity in maintaining a healthy lymphatic system. In fact, exercise or activity is one of the key components of lymphoedema management, along with skin care and use of compression garments (O'Neill, 2019).
Why those with lymphoedema may avoid activity
There are four main reasons why people with, or at risk of, lymphoedema or chronic oedema may be inactive:
However, having lymphoedema does not mean individuals cannot continue with the activities they enjoy. Not only have many forms of activity been shown to be safe, but a wide range of benefits have also been reported in a recent systematic review (Panchik et al, 2019). Additionally, having lymphoedema also does not mean that the person cannot start a new activity or physical challenge. In fact, everybody can do something to be more active and reduce lymphatic swelling. There are some points to consider to make sure any activity works best for each individual, but the good news is that inactivity is the enemy when it comes to lymphoedema, and any activity enjoyed is likely to benefit the lymphatic system if a few simple principles are followed, for example, taking it easy, starting slowly and monitoring breathing and building up very gradually. Effects should be monitored and, if there are problems or an increase in swelling lasting more than 24 hours, the activity should be reduced or temporarily stopped until the issue is resolved. Whatever the activity, it should be undertaken regularly. If there is a prolonged period of inactivity, it should be restarted very slowly (BLS, 2020).
If a compression garment is prescribed, wearing it during exercise may prevent any temporary increase in swelling during activity, provided that the garment is well fitting. Although there is no evidence of the benefits or drawbacks of wearing compression garments while exercising, this practice might help further drain the affected tissue, as it may increase pressure in the tissue and help reduce fluid volume (Singh et al, 2016).
What to expect during the campaign?
The BLS EveryBodyCan campaign addresses provides guidance and tips on different types of activity and how to get started, regardless of existing levels of fitness or activity. Resources are being developed or identified to assist health professionals and fitness trainers to support and appropriately advise and guide patients who have, or are at risk of, lymphoedema.
As part of the campaign, there will be a BLS presence at more events, including some organised partners. There will also be features in partner and supporting organisations' publications, and the BLS will be working with other organisations to develop content on their websites where relevant. The BLS will be making presentations at many such events about activity and the campaign and actively promoting activity via social media through the year. Additionally, branded materials and resources are being developed and will continue to be expanded over the year as a lasting legacy from the campaign.
The BLS is working with two organisations to increase understanding and enhance support offered to those with lymphoedema by fitness trainers across the UK: Better and Community Leisure UK. It is hoped that this will increase opportunities for those with lymphoedema to have free trial membership and reduced ongoing rates at many local sport and leisure centres as well as to receive appropriate advice. For instance, the BLS will be involved with the Better conference in June 2020, and this will be during Legs Matter Week, which it will also be promoting with support from other coalition members.
Lastly, Lymphoedema Awareness Week in March 2020 will provide additional opportunities to raise awareness, generally and specifically, about activity. There will be many events held by members and corporate partners of the BLS along with a very active social media campaign.
Supporting the campaign
All information about the EveryBodyCan campaign is available at www.thebls.com (BLS, 2020). The campaign managers are very active on social media, and people can spread the word by tagging posts and retweeting with the hashtag #EveryBodyCan and by including the Twitter handles of key groups or individuals where relevant. The BLS has a brand new Lymph Fact Sheet on Activity and Exercise, available on the campaign page of the BLS website. The BLS encourages health professionals to take any opportunity to share campaign messages and materials with colleagues and relevant groups in their community in meetings, at events and via local groups, with an interest in supporting people in being more active. People can identify who their BLS Regional Ambassador is and determine if there are any local events with which they could help. Those with knowledge of or an interest in a particular activity can consider writing some simple guidance on the activity that could be used by other health professionals and the public on the website. Further, those who know of a patient who has faced and overcome challenges in being active with lymphoedema, and who would be willing to share their story as inspiration to others, can contact the BLS administration to help spread the message. Health professionals can get involved in local and regional fundraising events that reflect being active, either themselves or supporting colleagues or patients. Those who register as a Friend of BLS can receive information about EveryBodyCan activities as they are announced. Lastly, they can get involved in Lymphoedema Awareness Week events (e.g. the Sock It Challenge) and share their ideas on any activities, so as to spread the word even further.