If you dream long enough, hold your dream against the doubters, disappointments and rejections, then miracles can happen, and today a dream I have held for 25 years came true.
In 1997 I travelled to Canada to study manual lymph drainage, and I also 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 as we viewed the photos of people with permanently swollen limbs after cancer therapy. 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 access to 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. At the same 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 now know is that I also needed to accumulate a whole bunch of other skills, being a good lymphoedema therapist was not enough.
In 2004 I was recruited to deliver CDT in a clinical trial at Flinders Medical Centre and University, 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 first hand that having a good therapist is not enough. It is the actions that people take every day at home and work that determine the overall success or otherwise of the therapist's treatments.
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 talk to their surgeons and physiotherapists at the Christian Medical Centre, Tamil Nadu, India, on 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 to conduct a large project at Flinders. Despite a big budget and good results, the study was never written up which was a great disappointment at the time, but I picked up some important project management skills that I would need later.
By now I knew that I was never going to be in a financial position that would allow me to volunteer large chunks of my time to work in LF-endemic countries. So in 2013 I relocated temporarily to Townsville to undertake a PhD at JCU with Sue Gordon, so I could focus fully on LF. And romantic notion number 2 was quickly dispensed with. 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', and so they fund drug and surgical therapies, and interventions that have commercial potential. It soon became obvious that none of the usual funding sources were going to give me money to educate people in daily self care using existing commodities such as sop and oil. Not even when it has been shown to make a massive difference in 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 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 my 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 from Nay Pyi Taw to Mandalay to deliver equipment for the start of our project which slewed on the wet road, fell over onto my side and skidded backwards across the 4 lane highway. Standing by the side of the road trying to hold an umbrella for a young man sitting in the mud with a pebble wedged under his knee cap, I started to feel a weird 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. And by the time this photo was taken during the recruitment phase of the study, I 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 a rich and variety career in vector borne diseases, 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 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 studies 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 inspiring to see how many family members and friends came along to learn how they could help too. In Ethiopia some people walked 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 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 them 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 an online training program. I was really disappointed not to deliver the training in these countries myself, but as always these online skills turned out to be skills I need to have!
The LKN Foundation now, 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 people 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. So 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 inaccessible communities.
From the seed that lay dormant for a decade sprouted the naïve sapling of my PHD research, 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 not have done any of this on my own, 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.