SET up a year ago, a service providing treatment in Gwent for lymphodema sufferers now has some1,000 people on its caseload.
And patients say the expertise of the staff is helping transform their lives, making it easier for them to live with what can be a very debilitating condition.
Lymphodema can cause severe swelling of limbs due to problems with the lymphatic system, a waste disposal system taking fluid, bacteria, proteins and other products away from tissues around skin, fat, muscle and bone.
These wastes – lymph – are filtered and cleaned when passing through nodes in the neck, armpits and groin, as part of the body’s process of getting rid of them.
But when the lymphatic system does not work properly, lymph can build up, causing swelling, severe pain and risk of infection.
There is no cure, the main treatments focussing on gentle massage to move fluid through the body. Compression and bandaging to try to minimise swelling is also key.
About 6,000 people in Wales and 240,000 in the UK have lymphodema, and the effects can be physical, psychological and social. It can hit people from birth or develop for no apparent reason, known as primary lymphodema.
It can also be triggered by surgery, radiotherapy, infection, or reduced mobility, where lymph nodes or the lymphatic system in general is disrupted or damaged, or muscle contractions – a key aid to lymph movement – are reduced. This is called secondary lymphodema.
Welsh Government funding of £1m led to a lymphodema strategy for health boards, and in Gwent, Aneurin Bevan Health Board set up its own service in 2012. The condition is a common consequence of cancer or treatment for cancer.
“We now have about 1,000 people on our caseload with a 50/50 split between cancer and non-cancer patients. We’re extremely busy, but there is obviously a need,” said Kim Wyness, lead nurse for the service, based at Newport’s St Woolos Hospital.
“A lot of our patients had not had a proper diagnosis until the service was put in place, and that diagnosis is very important. It’s a holistic approach and we have to look at patients as individuals.
“We have other clinics at Nevill Hall Hospital in Abergavenny, Chepstow Hospital and Ysbyty Ystrad Fawr in Ystra Mynach.”
Lindsey Walkley, from Caldicot, is a patient benefiting from the service.
“It is amazing to have these nurses and the different equipment and treatments available,” said Mrs Walkley.
“It’s also good to meet others with this condition, as you can feel very isolated. Physically, my pain has reduced. but I also feel better in myself. I’ve benefited big time.”
Karen Thomas, of Cwmbran, has primary lymphodema, which flared up when she was 40 and needs massage.
“I can end up in hospital with cellulitis, so it’s very important to know early if I have a problem and seek help,” said Mrs Thomas.
“It can be very scary, but things are a lot better now this service is here. The staff are fantastic.”