Date: 19 April 2024

LYMPHO News April 2024

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LYMPHO NEWS

Dear friends,

It was so good to see how active the lymphoedema community was during Lymphoedema Awareness week in March. Our hope is that the enthusiasm seen in that time will continue throughout 2024 — albeit in a much quieter way. Those of you with lymphoedema continue to ask questions and express the need for more information. Research is taking place but needs financial backing and in the current climate that is not always easy to find. And, of course, unlike cancer or heart conditions, lymphoedema is not high enough on the medical agenda.

The ILF, along with other organisations, is striving to change this attitude so that causes and treatments may be addressed and patients’ needs met. Please join us in this pursuit.

As always, it is great to hear your news — research findings, collaborations, new initiatives, or upcoming events, etc. Please do get in touch so that we can share what is happening within the ILF global community through this newsletter.

With best wishes,

Christine Moffatt CBE and the ILF Board of Directors

Challenges in the fight against lymphatic filarisais in Uganda

A recent initiative saw Professor Christine Moffatt CBE and Professor Linda Gibson conduct specialised training for a select group of Ugandan health professionals. The focus was on the practical use of bandages and compression socks to manage oedema effectively. This training session marks a significant step towards enhancing local expertise in managing lymphoedema more effectively.

Supporting these efforts, the Cizeta Medical team generously donated medical supplies including bandages and compression socks. These were distributed free of charge to individuals suffering from lymphoedema during the training sessions. Plans are in place to distribute the remaining items to the most impoverished people living with lymphoedema, who would otherwise be unable to afford such essential medical aids.

Compression garments donated by Cizeta medical team.

While a proven intervention, compression faces its own set of challenges in Uganda. Properly measuring limb volume and understanding the underlying health conditions that complicate the use of compression remain significant hurdles.

Cultural and personal preferences also play a role in the acceptance and effectiveness of these treatments. For instance, people living with lymphoedema expressed a preference for black over brown compression socks citing a closer match to their natural skin color, emphasising the importance of considering cultural sensitivities in medical interventions.

Professor Christine Moffatt CBE examining a person with pedal oedema.

Lymphoedema Wales Clinical Network

On 21 February 2024 the Lymphoedema Wales Clinical Network held a ‘Living Well with Lymphoedema’ event at the Pierhead Building at the Senedd in Cardiff, kindly sponsored by Joyce Watson MS and introduced by Jack Sargeant MS. The event brought together 50 people from the South and East of Wales living with the condition, for peer support and education.

It was fantastic to have a range of stands offering self-management support with organisations involved in compression garments, engagement in work and volunteering, online CBT courses, psychoeducation and peer support groups, and lymphoedema support organisations, as well as local health board services. The Welsh Minister for Health and Social Care and the Chief Executive of NHS Wales also popped in to share some of the day with us all.

There were a wide range of presentations on physical and psychological areas of self-management, including a fun dance session for all.

Matt Hazledine and Ellen Collard also shared their personal experiences of living with lymphoedema and how they cope daily — it was clear from the feedback that attendees really valued these shared experiences.

Thank you to everyone that attended and all those that made this event possible — hopefully it is the first of many more!

Australian Federal Parliamentary Friends of Lymphoedema - report from Monique Bareham

On 20th March 2024 Australian lymphoedema experts (lived experience/clinical/research) and 25 key stakeholder organisations from across the country came together with numerous Federal Parliamentarians, including co-chairs Louise Miller-Frost MP and Dr Monique Ryan and with the assistance of Monique Bareham, leading lymphoedema advocate, 2022 SA Local Hero, to launch the first Australian Federal Parliamentary Friends of Lymphoedema. The aim of the group is to improve the health outcomes of all Australians affected by #lymphoedema. This is a milestone in Australian lymphoedema patient advocacy and for the first time creates an inclusive space for a diversity of voices to engage with decision makers in the national lymphoedema conversation. Too many vulnerable members of the Australian lymphoedema community are left to suffer needlessly in silence and it is hoped that through this initiative we can work together to bring an end to this.

To hear more about what our international frameworks are doing worldwide, just click here

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