Global collaboration is vital for those living with lymphoedema

Christine Moffatt CBE

Professor, Founder and Chair of Board of Directors of the International Lymphoedema Framework (ILF)

Lymphoedema and lymphatic filariasis are two conditions that are often neglected in the tropics as well as in cooler climates.

Lymphoedema is a major neglected tropical disease (NTD) you may be born with (primary lymphoedema) which can often affect children from a young age. Furthermore, lymphoedema may develop as a secondary effect of medical or surgical treatment, particularly related to cancer or other diseases or treatment procedures that cause damage to the lymphatic tissue of your body.

In certain parts of the tropics, lymphatic filariasis (LF) transmitted by mosquitoes is the most common cause of secondary lymphoedema.

Lymphoedema of different origins causes swelling of limbs or other parts of the body including the head, neck and the genital region.

Untreated or poorly managed lymphoedema frequently leads to stigmatisation and loss of personal confidence to engage in social and physical relations with other human beings.

In certain parts of the tropics, lymphatic filariasis (LF) transmitted by mosquitoes is the most common cause of secondary lymphoedema.

Increasing awareness of the condition

As an organisation, we focus our work on increasing and improving the knowledge about lymphoedema including the important role of compression therapy, a mainstay in treating lymphedema.

We contribute to improving knowledge by either initiating our own research programmes, such as the LIMPRINT prevalence study which assessed over 13,000 patients in nine countries and from which we continue to publish new articles. We are now working to create new partner sites in Uganda and South Africa.

We believe that the task of working with lymphoedema and LF globally is immense. Thus, collaboration and sharing of knowledge is crucial to improve the lives of people living with lymphoedema.

The 10^th International ILF conference is scheduled to take place in Copenhagen, Denmark on the 18-20 November 2021 in collaboration with the Danish Wound Healing Society (DWHS). ILF 2021 will be run as a hybrid conference expected to gather a live audience of minimum 500 delegates as well as global online participants. A special low registration price will be offered to patients and to online participants from resource-limited settings.

Case studies: working on the ground

The Institute of Applied Dermatology (IAD) in Kasaragod, Kerala, India is founded and actively led by Dr S.R Narahari, who dedicates his professional life to research and local treatment of patients suffering from LF and other lymphoedema related disorders. An important element of local treatment of LF in villages is teaching patients about lymphoedema self-care techniques and principles.

The World Alliance for Wound and Lymphoedema Care (WAWLC), through its activities in resource-limited settings worldwide, promotes the prevention and care of wounds and lymphoedema, including LF. In the midst of the COVID-19 pandemic, WAWLC published the second edition of its book “Wound and Lymphoedema Management: Focus on Resource-limited Settings” which includes some chapters dedicated to LF treatment principles.

Finally, climate change increasingly influences most agendas in the world and LF and lymphoedema are no exemption. Clinicians and researchers are becoming aware that a warmer climate is likely to cause an expansion of the latitudes within which LF in endemic.