The more I get involved with the lymphedema world; whether it’s meeting other patients, doctors or specialists; I am always amazed by the level of pure passion and dedication everyone has to improve the lives of people who live with the condition.
I went to Paris last weekend as I was invited to be a guest speaker at the LE patient day hosted by Orthopedie Meyrignac. Over 100 patients attended the day and had the opportunity to talk face to face with doctors, physiotherapists, compression garment companies and other lymphies, to learn about the latest treatments and innovations to help manage lymphedema better.
This was actually the very first time I have attended a patient day so I didn’t really know what to expect, other than I was going to meet a lot of other people with lymphedema! This is, of course, a big reason why I wanted to go- I love talking with others to see how they live with the condition. I cannot emphasise enough just how important it has been for me personally to communicate with other lymphies and share the ups and downs of this journey. I have learnt everything about this condition and so much about myself by listening to others share their stories and words of advice with me.
The best thing about the patient day was that all the important information was available in the one spot and I really got the chance to talk in depth about some lingering questions I had about my own management. For example, I had heaps of questions about MLD and bandaging and was able to ask a few different professionals and get some really good feedback and direction for myself. I feel like the search for information is never-ending when it comes to lymphedema, so having this opportunity to talk directly with the professionals made it heaps easier to get some important questions answered.
The way I live with lymphedema is not how a lot of other people live with it- we have all walked such different paths to get where we are today and for some, it’s been really, really tough.
(Which makes me realise how important My Lymph platform is and the need to provide this information to patients!!!) I also went around to each compression garment company and spoke directly with their representatives about the products. The exciting thing to note is that there are some great innovations emerging in compression garment design (eg: toe caps integrated into a full stocking!) that will give us even more options in the near future.
I was exhausted by the end of the day! In a good way of course. It was extremely eye-opening to see how each person lives with this condition- it’s truly unique to the person who has it and there is not one case the same. We all experience different levels of discomfort, we all respond to and tolerate compression in completely different ways. We all have different levels of acceptance of our condition- some of us fight harder against it than others and there are some people who have given up the fight altogether.
The way I live with lymphedema is not how a lot of other people live with it- we have all walked such different paths to get where we are today and for some, it’s been really, really tough. So accepting lymphedema in their life is a bitter pill to swallow. I think it was important for me to have this moment/ realisation or whatever you want to call it… it made me realise there is still so much to learn about lymphedema.
You can follow Orthopedie Meyrignac on Facebook (they are new to the social media thing but understand the importance of educating patients through this kind of platform- so you will be seeing more from them in the future!). If you are in Paris and not completely satisfied with your garment fitter, ditch them and head over to see Carolyn- she is super passionate about finding the right solution for everyone and knows the products extremely well.
Lastly, I’ve included a list of the doctors, physios, specialists and garment companies that also attended the day. Perhaps it could be handy as a reference for you in the future!
- Dr Stéphane Vignes, chef du service de lymphologie à l’Hôpital Cognacq-Jay
- Dr Laura Simon, adjointe du Dr Vignes
- Dr Claude Boiron, oncologue à l’Hôpital René Huguenin
- Mme Maryvonne Chardon-Bras, présidente AVML France
- Mr Frederic Guyot, clinique Hartmann
- Mme Huguette Savoie, cure thermale de Luz-Saint-Sauveur
- BSN Radiante, Mme Martine Comyn et Mr Antony Luce
- Juzo, Mr Pierre Leygonie
- Thuasne, Mme Isabelle Costa et Mr Jérôme Monin
- Karl & Max, chaussures ordinaires pour pieds extraordinaires
- Initiation to nordic walking by Lympho’sport : Mme Eléonore Piot
- Self lymphatic drainage : Mme Chardon-Bras
- Bandaging : Mme Huguette Savoie