Joanne Illsley, British Journal of Nursing, 2018, Vol 27, No 12

Main findings

• Archie was born with primary lymphoedema in both his arms and legs. Until he was 2½ years old we assumed that his very swollen arms and legs were just baby chubbiness. In August 2014 Archie’s legs became extremely swollen and were very stiff and tight.
• Archie wears full-length compression on both arms and legs. Some days it is a struggle to get them on as he gets upset because they are itchy and tight.
• He uses a wheelchair as he cannot walk long distances. He has a lot of leg pain and has had to learn to write with compression garments over his hands. Archie gets extremely tired and cannot be on the go constantly. We have learnt to find the balance between being active and resting regularly.
• Swimming and jumping on a trampoline are very beneficial for Archie: swimming takes pressure off the joints and the trampoline is great for getting the lymphatic fluid moving. However, it does cause pain and swelling afterwards, so they have to keep an eye on that.
• Joanne performs Archie’s MLD twice a day to encourage the fluid to move and ensure that his skin is clean and well moisturised.
• He has to be measured for new garments regularly, measured for Piedro orthotic boots (he cannot fit into high street shoes because his feet are swollen), and he has regular physiotherapy and occupational therapy appointment.
• People also ask what he is wearing on his arms and legs. This serves as a constant reminder of the lack of awareness about lymphoedema. In the past, Joanne would have been upset by these questions. However, she is now able to educate people about lymphoedema, and the reaction has been very positive.
• Joanne has learnt it is important to focus on the here and now.