Outgoing Chair: Nina Murray
I’d like to introduce myself as Chairperson of Lymphoedema Ireland.
My name is Nina and I have been living with secondary lymphoedema in both of my legs and abdomen since 2009. I developed the condition following treatment for cervical cancer in 2008 when I was 29 years of age.
I, like so many other people, struggled and continue to struggle to get access to treatment for my lymphoedema. At first my GP did not recognise my swelling as lymphoedema. Then, because of a lack of adequate services in the hospital where I was treated for my cancer, I needed to pay privately for manual lymphatic drainage and bandaging treatment. In the years since, I have spent some time as an inpatient in a specialist lymphoedema clinic in Germany and continue to struggle to get regular treatment here in Ireland. I do however, work hard to manage my swelling and am fortunate to be able to bandage myself and take control of some of my treatment.
On a day to day basis, I wear high grade compression garments that are made to measure me and my swelling – a toe cap, a thigh high and full tights. I pay for these myself as I am not entitled to assistance from the public health system. I, like so many other people with lymphoedema, struggle with ordinary things that many other people take for granted. I find getting shoes and trousers to fit me particularly difficult. I am always conscious that one of my legs is bigger than the other, and I find it difficult to stand, sit and walk for long periods of time. That said, I have a positive outlook and do my best every day to live well with lymphoedema. I educate myself as much as I can about my condition and the things that I need to do for myself to keep healthy and as independent and active as possible. As time has passed, I am becoming more confident and open about my swelling. So confident that I told the Irish Times about it back in March - read the article here!
I became involved with Lymphoedema Ireland after attending one of our regular Open Days. I had never met someone with lymphoedema and there I was at my first Open Day surrounded by people just like me, though some have lived with lymphoedema all of their lives. I was also surrounded by people who struggle just as hard, and in some cases much harder than I do, to manage their condition and get access to treatment. I decided to become involved with the Committee as I feel passionate about the needs of people living with lymphoedema regardless of how they have come to have developed the condition. I know how important support from people who understand what it is like to have lymphoedema is. I feel strongly that lymphoedema is an incurable condition that can be well managed and with proper treatment and support, people can lead very normal lives. Equally, I know that without proper support and long-term care lymphoedema can have a devastating impact on people’s lives.
I am committed, as Chairperson of Lymphoedema Ireland, to ensuring that people like me have somewhere and someone to go to for support and, that the public health system recognises and supports the treatment of lymphoedema, and people living with it, in recognition of the chronic long term condition that it is.
I would encourage everyone to get involved in promoting and supporting Lymphoedema Ireland or to come along to one of our Open Days, become a member, or follow us on Facebook or Twitter.
I’ll be updating our website regularly to keep you up to date with our campaign for better services so keep checking in.
See you soon,
Incoming Chair: Patricia Murphy
Sadly Nina is stepping down as Chairperson of Lymphoedema Ireland but she has kindly agreed to continue her tremendous advocacy work for us. She will maintain contact with key healthcare professionals and leaders to fight for appropriate and equitable treatment. I would like to thank Nina for her trojan work, which she does on top of an already hectic schedule. Thank you so much Nina!
My name is Patricia Murphy and I am the new Chairperson of Lymphoedema Ireland. I have secondary lymphoedema, following breast cancer treatment. With a general interest in the condition and a background in nursing, I have some practical knowledge of treatment and care.
I joined the committee two years ago to help out with the newsletter. In a way, I became Chairperson by default! However I hope, with your help, to keep up the good work of previous Chairs. I will work towards having lymphoedema recognised as a chronic condition and fight for appropriate service for all.