What happens when children see your lymphœdema for the first time? How do you deal with it? How do they deal with it?
Michelle Freke’s book explores these questions in a child friendly, super-hero type way.
Super Nan and the Secret Support Network
Category Archives: About
The Big Book of Lymphœdema
Stora boken om lymfödem är speciellt riktad till barn. Den förklarar på ett lättförståeligt sätt vad lymfödem är och hur det kan behandlas. – SÖF
Författare är Dr Jacquelyne Todd 
ISBN 978-91-637-2163-2
The award-winning children’s book The Big Book of Lymphoedema aims to help children and families understand the condition by presenting useful information in a colourful, eye-catching and child-friendly format. Originally launched in April 2010, the book was written by Dr Jacquelyne Todd, who was a physiotherapist consultant in lymphoedema at The Leeds Teaching Hospitals NHS Trust, before she retired in 2013. A new edition with subtle updates is available from the LSN.
Getting the Treatment Right
Published by BLS on its YouTube channel:
The British Lymphology Society exists to preserve and protect good health of people living with lymphoedema / chronic oedema. Lymphoedema occurs when the lymphatic drainage system fails; chronic oedema is indicative of failure of lymphatic drainage. Both of these terms are used interchangeably to emphasise the need to manage both the initial cause of the chronic oedema and the lymphatic failure concurrently.
thebls.com
What is lymphoedema? A deep dive…
Courtesy of our resident physio, Élodie:
A deep dive into the plumbing of your body. We hope to provide alternative language versions, but if you are a tech-whizz, or know one, you may be able to persuade your smart phone to provide a simultaneous translation for yourself. If you do share how you did it with your friends here in the comments.
This video is included in Élodie’s Lymphobook – do have a closer look.
For more information follow this link…(to a location which does not yet exist but shall when someone provides the document)
Lymphobook
Élodie our exotic, knowledgeable and wonderful Fisioterapista has written an exciting new book:
Open the book in its own page:
Care of Children with Lymphœdema
Care of Children with Lymphoedema
Date of Publication: 2010
Author/s: Isabelle Quéré, Christine Moffatt
Description:
This focus document provides practitioners with an overview of childhood lymphoedema: the causes, presentations, and approaches to management.
Download
The second question is
Did you read about South Africa, Switzerland, the Netherlands or India today? You can find more information about all the ILF national frameworks and learn more about the ILF here
So today’s question is:
What is the main cause of lymphœdema worldwide?
Answers please in the comments box below. If you wish to remain anonymous please say so otherwise we shall publish, subject to editorial discretion, what you have to say.
The first question is
What do we do and why?
All the national lymphœdema frameworks work hard in researching, accessing, educating, and above all hearing and treating patients – the patients are why we do what we do.
The next two questions are for you today:
What is the biggest challenge for you with lymphœdema?
What is your greatest wish long-term for living with lymphœdema?
Answers please in the comments box below. If you wish to remain anonymous please say so otherwise we shall publish, subject to editorial discretion, what you have to say.
Genetics and Primary Lymphœdema: Q&A
Published by VASCERN on their YouTube channel:
VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.
Lymphœdema – a teenager’s perspective
Published by VASCERN on their YouTube channel:
VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.