One-stop portal for lymphedema
Published: 19 Apr 2021
Swelling of the limbs, hardened skin, stiffness or tightness of limbs – these are common symptoms experienced by patients who suffer from lymphedema, a chronic and progressive disease where excess fluid collects in tissues.
This condition results in painful swelling of the limbs that greatly limits mobility. The causes of lymphedema range widely, but it is commonly found in cancer patients who have undergone surgery or radiation therapy as part of their cancer treatment. Unknown to many people, this condition becomes manageable with correct care management.
Slightly over 250 million people around the world are recorded to have lymphedema. Yet, the breakdown assessment of the number of lymphedema cases in each country is unknown. In the United States, a vague estimation reveals that 2 to 3 million people are affected with secondary lymphedema. In Singapore, there is no such registry recording lymphedema cases. With the under-documentation of incidence rates in many countries, lymphedema remains an under-recognised condition.
Currently, there is no support system for sufferers and their caregivers. Information on lymphedema and how to effectively manage and treat this lifelong, debilitating disease is scarce.
It was during her PhD student days that Associate Professor Veronique Angeli, Director of the Immunology Translational Research Programme at NUS Yong Loo Lin School of Medicine, started developing a special interest in lymphedema research, with a focus on lymphatic vessel biology and function. She became more involved in the research after collaborating with Associate Professor Tan Bien Keem from the Singapore General Hospital (SGH) to develop a staging system for lymphedema and lymphedema drug therapies.
In 2018, there was consensus that a Lymphedema Society be formed, and the Lymphedema Society of Singapore was officially founded in April 2020.
Following that, Assoc Prof Angeli recruited four Phase III medical students, Chanel Lee, Lee Zhi Yan, Nigel Sim and Leighton Teo, to set up a new society website that would serve as a comprehensive information portal to contribute to public education and awareness.
The students noted that information on lymphedema is currently scattered across various websites, which makes it confusing for the patients and their caregivers to navigate and retrieve the information they need. This website aims to serve as a convenient one-stop information portal on lymphedema, catering to patients with lymphedema, their caregivers and healthcare practitioners, to understand about lymphedema, treatment options, and care methods to prevent further deterioration of the disease. The team hopes that this website will spur more conversations surrounding lymphedema and promote further research into the treatment of this disease.
As the saying goes, “The beginning is always the hardest” – this project proved to be a steep learning curve for the students who were novices in website development, logo conceptualisation, video production and editing. The students raced to master new skill sets from scratch within a limited amount of time, making this endeavour a test of patience and discipline. It was made more challenging when project meetings were forced to turn virtual when circuit breaker period was announced.
The students said that it was disruptive when multiple people attempted to speak during meetings over Zoom, so they decided that only one person should be talking at any one time to ensure the session can be more effective and productive for all.
The students gamely rose to the challenge and eventually produced a repertoire of lymphedema content, including 14 lymphedema-related educational videos such as teaching patients how to put on the various compression garments. This project provided teaching opportunities for the students who had little knowledge about lymphedema and its treatment options as it is not covered in detail in the medical curriculum.
Ultimately, one of the team’s greatest takeaway is learning the importance of teamwork, which is even more crucial in the discipline of medicine and healthcare.
The students agreed that teamwork was the crucial ingredient in the successful completion of this project. Initially, members would meet online just to edit videos together. It quickly proved to be unproductive so each member was charged with a specific task that range from doing voice-overs, video splicing, background music sourcing and music splicing. The delegation of roles allowed them to produce quality videos and meet the tight deadlines quickly.
Visit The Lymphedema Society of Singapore to find out more about lymphedema and help spread the word!
