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Southern Trust raising awareness of Lymphoedema in children

The Southern Trust’s Lymphoedema Team is raising awareness of the condition in children.

Lymphoedema arises when the lymphatic system which regulates fluid balance in the body and helps to fight infection, does not work properly. This can result in a build-up of fluid and painful swelling anywhere in the body but mostly in the limbs.

Lynne Whiteside, Lymphoedema Clinical Lead for the Southern Trust says: “Lymphoedema is a chronic, progressive condition with no known cure as yet.  Whilst Lymphoedema in adults is quite common and more so amongst cancer patients, it can be quite rare in children. The cause of Lymphoedema in children is often genetic and as it can affect their development, it is absolutely vital to diagnose Lymphoedema as early as possible to improve and control swelling or any other symptoms.”

One mother of a now six year old girl, who was diagnosed as a baby says: “It was terrifying once we realised how rare it was to be born with Lymphoedema.

“We learned about the treatments to help maintain the swelling and that the earlier this treatment was started the better. Our Lymphoedema Physiotherapist quickly became one of the most important people in our lives.

“She showed us how to carry out manual lymphatic drainage, taught us the importance of a skincare regime and ensured we have a podiatrist on hand.

“As our daughter got older she gave us an exercise plan, introduced kinesio taping and started using compression garments.

“The expertise, knowledge, advice and support we receive from her is invaluable. We have gained confidence in meeting our daughter’s care needs and are less anxious about the issues that this condition brings on a daily basis.

“Thankfully with this help our daughter lives a very normal life – just with a few modifications. She doesn’t feel any different to her friends, goes to school, enjoys ballet dancing, playing in the park and doing all the things little girls like to do. She doesn’t see her condition as a barrier in any way and long may that continue.”

Another parent of a boy who was diagnosed at two years old shares her story: “As a parent, it is difficult to receive any diagnosis and initially you feel overwhelmed as you don’t know how it will affect your child or who to turn to.

“We have been reassured through the Lymphoedema Support Network, by others who despite facing difficulties have not let their Lymphoedema hold them back in life.

“Our GP referred us for specialist physiotherapy with Catherine who has been such a support and has a great connection with my son. Her knowledge of the condition, her expertise and gentle, reassuring manner have put us all at ease and helped us on our journey.

“It is great to have someone to contact and help us along our way. He now wears bandages or compression tights to help reduce swelling and we have been shown how to manage his Lymphoedema at home. He loves visiting Catherine and he has benefited greatly from her specialist care.”

The Southern Trust Lymphoedema service caters for all ages and works closely with specialist paediatric physiotherapists when required to support children and young people with the condition.

Unexplained swelling should be discussed with your GP in the first instance. Some investigations may need to be completed and referral can be made to the Lymphoedema service for assessment and management.

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