If you dream long enough, hold your dream against the doubters, disappointments and rejections, then miracles can happen, and on World Lymphedema Day a dream I have held for 25 years came true. #WLD
In 1997 I studied the Dr Vodder Certificate of MLD and CDT in Canada, where for the first time I learned about an incurable, disfiguring and debilitating disease called lymphoedema. This was something I had never encountered before in my clinical practice, and found myself in tears watching the case study photos of people will swollen limbs after treatment for cancer, how could this terrible thing happen to people?
And then came the photos of people affected by lymphatic filariasis-related lymphoedema. Not only were these people afflicted with the same horribly swollen limbs, they were also living in poverty with limited health care services of any kind, let alone the complex therapy I was learning to apply. I knew then that somehow helping these people was what I really wanted to do with my life. Although at the time I needed to raise a child and pay a mortgage, so although the seed was planted it seemed more like an impossible dream. What I know now is that I also needed to gain many other skills, being a good lymphoedema therapist was not enough.
In 2004 I was recruited to deliver treatment in a clinical trial at Flinders with Professor Piller's team and that same year I was diagnosed and treated for breast cancer. Lymphoedema prevention and self-care hadn't been emphasised in my training program, but now I was finding out how important the actions that people take everyday for themselves are, to the success of the treatment.
After a few years of treating myself I had my hand and breast lymphoedema under control and was emphasising self-care to all my clients.
In 2010, I was part of a group of therapists led by Prof Piller who were invited to Christian Medical Centre in Tamil Nadu India to talk to their surgeons and physiotherapists about lymphoedema management. My romantic notion that people would welcome me with open arms when I brought my lymphoedema skills to their village was dispelled quite quickly while visiting a Rural Outreach Centre.
The Director told us she wasn't interested in lymphoedema because people didn't die from it and she was far too busy with more important diseases.
This only made me more determined than ever to do something for people in LF-endemic countries, but first I needed some more of those 'other' skills, and my transition into full time research was complete in 2011 when I closed my clinic in the Breast Unit at Flinders to conduct a large clinical trial. Despite a big budget and good results, the study was never written up which was a great disappointment at the time, but in hindsight I was gaining important project management skills that I would need later.
By now I knew that I was never going to be in a financial position to volunteer large chunks of my time to work in LF-endemic countries, so in 2013 I began my PhD studies at JCU with Sue Gordon, and romantic notion number 2 was quickly dispelled. In my naivety I thought we would apply for a few grants and get at least one of them. But the reality is that the major donors like things that can be 'cured'. They'll happily fund drug or surgical therapies and interventions that have commercial potential. But it soon became obvious that none of the usual funding sources were going to give me money for education in daily self-care, even when it has the potential to make a difference to the quality of life for millions of people, and prevent a life of disability for millions more. Tells you something about how our funding systems work.......
So I turned to crowd-funding, which was in its infancy a decade ago, and not only did JCU not have a policy on it, no-one knew how to help me with it either.
So I researched it, set up the Myanmar Project Campaign online and asked all my friends and family to tip in. Our dear family friend, retired Children's Court Chief Magistrate (Lloyd) Kingsley Newman, stepped up with a contribution of $5000 which really blew me away. As he handed me the cheque he told me to never let the project stumble for a lack of finances, and he has been good to his word, handing over several more sizeable cheques since.
Crowdfunding was hard work! I frequently felt that if I went and got a job I could earn more money more easily - but thanks to the 237 people who gave me their hard earned cash, we soon reached our goal of $30K for the first research project in Myanmar. Of course, there were more challenges to come, and any remaining romantic notions I had that my project would be welcomed by the Ministry of Health dissolved in tears as I sat in my hotel room for a week, waiting to get approval to travel to the prospective study site.
Fortunately the WHO Technical Advisor to the National LF Elimination Program arrived from Yangon and got things moving for me - thank you Dr San San Win! Once I was able to get things going I had the support of many lovely and dedicated people in Myanmar and still have strong ties there.
The challenges weren't over though, and in late 2014 I was in a bus travelling to Mandalay to deliver equipment for the start of our project when we skidded on the wet road, fell over onto my side, sliding backward across the 4 lane highway. Standing by the side of the road trying to hold an umbrella over a young man sitting in the mud with a pebble wedged under his knee cap, I started to feel a sense of relief. This was the last straw, I could abandon the project now and do something easier!
But Kingsley had said "never let this stumble..." so I couldn't let it stumble just because I needed a few stiches. By the time this photo was taken during the recruitment phase of the study, I clearly remember feeling that if I died now I'd be happy - I was here in Amarapura Village doing something about LF-related lymphoedema.
My academic advisor Patricia Graves, who has expertise in vector control and serology studies in several neglected tropical diseases (NTD), was with me for several of the Myanmar trips and has believed in and supported my work ever since. It was Tricia who mentioned me to the Liverpool School of Tropical Medicine where Dr Louise Kelly-Hope (another Aussie) offered me a contract with the Centre for Neglected Tropical Diseases as a lymphoedema consultant.
CNTD were involved in operational research and program management with many LF-endemic countries and with funding from GSK and DFID we conducted trials in Bangladesh and Ethiopia on improving self-care for people affected by moderate to severe lymphoedema. It was a humbling experience to travel to these rural communities and see how willing the people were to learn to help themselves, and how many family members and friends came along to learn how they could help too. In Ethiopia some people had to walk for 2 or 3 hours to get to the health post for the the training program.
These first two studies investigated whether adding lymphatic exercises and massage to the WHO recommended program (primarily a hygiene regime to prevent secondary infections), could improve on the benefits that people achieved through their investment in daily self-care. The answer is yes and all our publications arising from the enhanced self-care study are available on the LKN Publication page. You can also meet our Bangladesh and Ethiopia research assistants on the LKN Partners page.
Further studies on our enhanced care protocol were planned for 2020 but the pandemic necessitated the development of digital training tools. Our wonderful trainers in Ethiopia (Fikre Hailekiros) and Bangladesh (ASM Syeed Mahmood) were able to travel to Malawi and Nepal to assist those national programs with the training of health staff, but Timor Leste required a fully online training program. So I was plunged into the deep end again, quickly learning how to edit videos and set up a fully online training program. I was really disappointed not to deliver the training in these countries myself, but as always, working out to make the online material turned out to be a skill I really need to have!
The LKN Foundation is not what I imagined when that first seed was planted in 1997. In a pre-internet, pre-pandemic world, my early visualisations were full of travelling to remote villages to help them with their lymphoedema, with a foundation that would enable other therapists to do the same, and a student placement scheme for new therapists coming through my training courses. This would have been a massive undertaking with insurance and security issues if we were to send therapists into some regions. But when the whole world went online in 2020 it became apparent that we could achieve our goals remotely since mobile phones are becoming more common, even in the most remote communities. From the seed that lay dormant for a decade, the naïve sapling of my PHD research has sprouted, and with the help of so many others is now a strong purposeful tree. We are working hard to spread our branches and bring our dreams and aspirations to fruit.
With the launch of the LKN Foundation on World Lymphedema 2022, I'm optimistic we will get there.
It's obvious that I could have done none of this alone, and there have been so many people around me that have kept the faith and encouraged me at every step. I am grateful to everyone that has helped and supported our work in the past, and to all those who will help and support us into the future.
Visit the LKN Foundation at www.LKNfoundation.org.au
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