Lymphedema has run in my family for over 116 years. When I started this blog, the initial purpose in the beginning was to spread lymphedema awareness about multigenerational lymphedema and lymphedema in families and young adults. In 1998 as a 24 year old, I was denied treatment for being too mild and was told that my lymphedema would never progress as badly as my father. Little did they know that I would go bilateral (like my grandfather) later in life in 2007.
If I had not been dismissed as a young adult, I am convinced that my progression would not have been to the point of not fitting into shoes. Instead this pivotal moment affected my life in profound ways, and that is why the following topic is very near and dear to me. When I see young people with lymphedema, those memories flood back and it inspires me anew to try to help in some way.
Dr. Rhian Noble-Jones is no stranger to the Lymphie Strong community. In 2019, she spoke to our group about genital lymphedema. I love that her work touches on subjects that do not have a lot of information, and she continues to push the envelope so that we all move forward collectively and are better educated. I am also excited to meet Mr. Karl Hocking and hear more about his work with Children and Young People for Lymphoedema Network Wales.
We hope that you join us to learn more about what health professionals and families should know about lymphedema. I, for one, am very proud and humbled to host this webinar.
Part I – National Children’s Lymphoedema Services
- National Children’s Lymphoedema Service history over the last 6 years
- Audit information showing more prevalence in children and young people than previously recorded
- Insight into new projects and symptom report tools developed from data, family fun days, and social media groups for CYP to network, including the difference having a national CYP specialist has had in delivering expert care to every corner in Wales
Part II – Health Professionals Need for Education and Next Steps
- Evidence presented that health professionals have an education need in this topic
- Suggestions from CYP lymphedema experts in focus groups
- How you can help get the perspective of lymphedema specialists worldwide by an online survey this Fall
Part III – Q&A
Total time: 45 minutes
Dr Rhian Noble-Jones, PT and National Lymphoedema Researcher
Rhian is a physical therapist who specializes in lymphedema education and research. She is national researcher for the publically funded (NHS) Lymphoedema Network Wales. She is also an Associate Lecturer for Swansea University, Wales, a Senior Honorary Lecturer for Glasgow University, Scotland, and Chair of the Scientific Committee of the British Lymphology Society. Her research portfolio is centred on the education needs of health professionals managing lymphedema. Her mission is to enhance the value of lymphoedema care by bringing together the care needs of people with lymphedema (of all ages) with the education needs of the professionals supporting them.
Mr. Karl Hocking, OT and National Lymphoedema Lead, Children and Young People
Karl heads a national interdisciplinary team of lymphedema specialists with specific training in the management of lymphedema in Children and Young People (CYP) for Lymphoedema Network Wales. He draws on years of experience as an occupational therapist within mental health and blends this into his specialist training in the paediatric and family field. Karl’s passion is around engagement, shared decision making, education and collaboration, reflecting his background as a keen sportsman and rugby player. His mission is to improve CYP lymphedema care….enabling families…empowering young people….making therapy fun for CYP and families.