Wednesday 22 November 2017

Brave Nina's battle with HSE

By David Looby

Nina Murray, chairperson of Lymphoedema Ireland.
Nina Murray, chairperson of Lymphoedema Ireland.

A local woman has highlighted the HSE's unwillingness to treat a rare condition she suffers from called Lymphoedema.

Lymphoedema is a long-term condition which has no cure, but it can usually be well controlled with early treatment focussed on reducing limb size, improving function and reducing the risk of infection.

Nina Murray, who is living in Castlebridge and originally from Bray, said her left leg remains very swollen years on from her initial prognosis which occurred while she was recovering from cervical cancer.

'My leg doesn't have to be this big. There was a window after the swelling started in which it could have been managed better.

Ms Murray, 35, had cervical cancer when she was 29 and received treatment in St Vincent's Hospital. 29 of her lymph nodes were removed and six months later she developed swelling in her lower left leg.

'Over a few weeks the swelling progressed so I went to my G.P,' she said.

A staff member of the Department of the Environment, Wexford, she was busy planning her upcoming nuptials two months later at the time.

Having attended her G.P., who had been very helpful in diagnosing her previous condition, she was told she would have to have been very unlucky to have developed Lymphoedema.

Ms Murray got married and travelled to Mauritius for her honeymoon but her condition worsened and upon arriving home she sought medical attention, attending a private therapist in Mayglass, Co Wexford who specialises in chronic swelling.

'I got some good reduction in my swelling but it cost €75 a session and I had sessions very often. I had to buy compression tights which were very unattractive. Vincent's were only seeing women who had developed problems after having breast cancer and there was no care for patients with lower limb problems. I was only new to Wexford. I ended up having to travel to Germany for my medical care under the EII2 programme in early 2013. While there, over several weeks, I had to wear the bandages for 23 hours and the fluid was moved to under my arm. I lost seven litres of fluid and it made a big difference.'

After the intensive treatment she returned home and was refused a second course of treatment in Germany on the grounds that similar treatment was available in Ireland even though this wasn't the case.

'Coming home was very difficult as I didn't have the same specialist care here.'

Today Ms Murray's leg remains in a swelled condition and it has impacted on many facets of her life and resultingly she cannot participate in as active a lifestyle as she was previously used to.

Today she is chairperson of Lymphoedema Ireland.

'I thought I was on my own but I discovered there are a lot of people like me out there. People who are really struggling for treatment with their condition. I want to do this for others, as well as myself. We, at Lymphoedema Ireland are trying to raise awareness about the condition; there are about 15,000 sufferers in Ireland.'

Ms Murray addressed an open day conference at the end of Lymphoedema Awareness Month on Saturday, March 28 in Dublin which was attended by keynote speaker Dr Vaughan Keeley, an expert in Lymphoedema and Consultant in Palliative Medicine, Derby Hospitals UK, who outlined the risks attached to the illness, including signs of swelling in part of the body, a feeling of heaviness, tightness, soreness or stiffness in the affected area and skin changes over time. Ms Murray said Lymphoedema sufferers must take care of themselves ass they are at a high risk of infection.

Wexford People

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