LYMPHO NEWS

Dear friends,

Here at the ILF we are getting very excited about our conference in Nottingham, UK from 13–15th June 2023.

The world-renowned Professor Peter Mortimer will be presenting at this year’s conference on ‘Fat and lymphatics: obesity and lymphoedema’. Elizabeth Webb is travelling from Australia to present her landmark results on cellulitis, so do join us to hear more about this fantastic study. Leading expert, Alphonse Taghian, will be visiting from the USA to provide an insight into the latest research on breast cancer-related lymphoedema. The breast cancer-related lymphoedema session also has some amazing international speakers lined up, including Cheryl Brunelle, Nele Devoogdt, Jean-Paul Belgrado and Katie Ritches, to mention just a bit of the packed scientific programme.

There’s so much to hear about, as well as the opportunity to network with others wanting to learn about recent developments and progress for patients with lymphoedema or lipoedema.

Nottingham is there to welcome you — it was once the centre of the world’s lace industry and is also renowned for being the home of the legendary Robin Hood and his merry men.

And, if you can’t make it in person, you can still watch the presentations and connect with other delegates from around the world by joining us virtually #ILF2023

We very much look forward to seeing you there to raise awareness of lymphoedema and related disorders and make sure it is prioritised on the healthcare agenda, worldwide.

Do keep us updated with your news — it is great to hear and is important.

With best wishes from
Christine Moffatt CBE and the ILF Board of Directors

ILF 2023 Conference in Nottingham, UK

Lymphoedema in Uganda

This pioneering work in neglected tropical diseases (NTDs) focuses on lymphoedema (LE) in Uganda and is part of the collaboration between the long-established Nottingham Trent University (NTU) and Makerere University, Kampala (MAK) partnership. The lymphoedema project will be instrumental in developing and piloting the first study for the International Lymphoedema Framework (ILF) in Sub-Saharan Africa in general and Uganda in particular.

Through the initial collaborative work as a project group, several challenges in managing people living with LE in Uganda have been identified. First and foremost, while all patients in Uganda are entitled to treatment as per the constitution, many health workers have inadequate knowledge in the management of LE, partly due to insufficient training. Second, there is no care package for LE at many health facilities. As such, patients only seek care from health facilities in cases of acute attacks, even though a care package for acute attacks is also non-existent. In an effort to curtail the spread of LE among the population, the government of Uganda together with international partners such as the World Health Organization (WHO) have used the mass drug administration (MDA) approach as a stop-gap measure.

On a personal level and given the fact that many people with LE do not get adequate care from health facilities, several strategies are used by people living with LE to manage the condition at home. These include, but are not limited to, the use of herbal remedies and caring for their legs. In the absence of standard care, sharing lived experiences and self-management strategies have been encouraged for people living with LE.

Financial constraints in accessing health care and medication, economic challenges arising out of the inability to work due to LE, lack of income, inability to afford basic necessities coupled with stigma and discrimination are some of the other major challenges faced by people living with LE in Uganda. Not having accurate data has also been pointed out as a major hindrance for the proper management of LE.

To address these challenges, several recommendations have been proposed, including:

• Involving more stakeholders from all regions
• Considering the environmental, cultural, and social contexts of LE in Uganda
• Using the existing Ugandan primary care structures such as Village Health Teams (VHTs) and health facility registers to collect more accurate data related to LE
• Encouraging community engagement and health promotion and using the media to raise awareness about LE.

This work in Uganda has been possible so far due to an unrestricted grant from the ILF. This has enabled some baseline data collection from a site visit to an island community, two stakeholder workshops with people living with lymphoedema, traditional healers, policy makers and focal NTD people drawn from districts across Uganda.

We would like to thank the facilitators and research associates from the NTU MAK partnership who have supported the workshops, as well as Uganda project leads, Ms Lydia Kabiri (Department of Nursing) and Dr Arthur Bagonza (School of Public Health) from Makerere University, and UK project leads, Professors Christine Moffatt CBE (ILF) and Linda Gibson (public health) from NTU.

Saudi Arabia Lymphoedema Framework

To celebrate World Lymphoedema Awareness month, March was particularly active for the Saudi Arabia Lymphoedema Framework (SALF), with two megaprojects taking place —the Saudi-LIMPRINT project and the first Saudi Arabia Lymphoedema Framework conference.

The Saudi-LIMPRINT project was launched on the 10th March to study the prevalence and impact of chronic oedema within disabled people in an in-patient rehabilitation hospital in Saudi Arabia and included 256 patients. Professor Christine Moffatt CBE and Susan Nørregaard helped during the practical part of this project.

On March 15th and 16th, Saudi Arabia Lymphoedema Framework (SALF) organised a conference, which included both national and international speakers and was dedicated to increasing awareness and improving knowledge among healthcare professionals, patients and the community.

Day one of the conference was patients’ day, with patients and carers having the chance to attend different lectures covering psychological, physical and functional aspects of lymphoedema and to ask questions in an open session with different healthcare specialities.

Industry support

The work of the ILF would not be possible without industry support. We thank the ILF Industry Partners for their continued engagement and support.

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· Reduced fees at future conferences
· Regular updates on activities and resources
· Opportunities to network with national lymphoedema frameworks
· Opportunities to influence future activities and direction.

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