Learning about Lymphoedema

As we all know, Lymphoedema is a complex condition and one that even doctors know very little about as they seem to spend minimal time studying the lymphatic system during their medical degree. Thankfully we haven’t had to visit our GP specifically about Lucia’s Lymphoedema because we have Lynne – our Lymphoedema guru – but on the odd occasion we have been to the doctor or health visitor for other things both Daryn and I have had to explain the condition, which I still find pretty astonishing.

When Lucia was first diagnosed by a Consultant Paediatrician we were pretty much ‘palmed off’ because it wasn’t a condition he was familiar with, leaving us to find the correct treatment for our little girl. You can read more about our early experiences here. When Lucia was getting her vaccinations at about a year old I had to ask the doctor to give her the injections in her arms rather than her thighs because of the risks associated with needles – although the doctor still tried to convince me that pushing 3 needles into Lucia’s legs would be no problem! In the end I had to insist Lucia’s arms were used.

Positive education

For us, it will be important that both Max and Lucia are familiar with the condition and to eventually understand exactly what it is – though to be honest I am still learning every day. As you would imagine, Lymphoedema is a word that is used a lot in our house and we have explained to Max in very simple terms about Lucia having swollen legs and feet. We have fantastic book called ‘The Big Book of Lymphoedema’ written by Jacquelyn Todd, a retired Lymphoedema Physio, and it is brilliant at explaining everything in a child friendly manner. We have read this to Max a number of times and he has enjoyed flicking through the colourful pictures and is aware that there is an issue with Lucia’s feet and legs that needs some help. We have also always kept him involved when we do her massage over the years so he feels a part of the process and knows how important this part of her treatment is. He has clearly been paying close attention to this as he would sometimes even help us out and knows exactly what to do and how gently we need to do it.

Up until recently Lucia has been a little young to start talking about her Lymphoedema and still isn’t ready for the book just yet. However, over the last few months we have started telling her that she has Lymphoedema in her legs and feet and that we have to do certain things to help her everyday. She already has perfect pronunciation of the word and when asked what we do to help her Lymphoedema she says:

1. You do my rub

2. You put cream on my legs

3. I wear my tights

4. I do lots of exercise – and she’ll mention one or two of the following: walking, running (which I still tell her not to do!), jumping, dancing and swimming.

Proud parents

Hearing these little snippets from Lucia and seeing Max trying to help us with her rub in such a gentle manner makes us very proud. We are happy that so far our six year old and three year old have a little bit of knowledge of something that plays a daily part in all our lives. It is also extremely important that they see it like this – yes it is part of our everyday lives but it is not a negative thing. It doesn’t stop us, or crucially Lucia, doing anything we as a family want to do or what she wants to do.

Little rascal!

And Lucia – being the wily little imp that she is – also has a new tactic to make an escape from her bed in the evenings without getting told off. She tiptoes out of her room and into ours and asks, very sweetly; ‘Do toys have Lymphoedema in them?’ knowing full well that she won’t get chased straight back to bed but will get a cuddle for being so cute about it all!