In 2016, CNTD began a programme with the Nepal Leprosy Trust and American Leprosy Missions to integrate services for lymphoedema patients into existing leprosy services at Lalgadh Leprosy Hospital and Services Centre (LLHSC) in the Terai Region of Nepal. As part of this work, members of established leprosy self-help groups (SHG) were trained to identify lymphoedema and refer these patients to the hospital so that they can receive training and treatment to manage their conditions. Training is conducted at the on-site residential self-care training centre (SCTC), where lymphoedema patients can stay for one week to learn and practice lymphoedema management techniques with the support of the SCTC staff as well as other people affected by lymphoedema and leprosy.
Puna is a 14 year old girl with severe lymphoedema in one of her legs. While the village where Puna lives does not have a self help group, she arrived at Lalgadh Hospital after a self help group facilitator from a nearby village identified her condition and advised her to seek care there.
Puna arrived without any footwear, as she was not able to find shoes that would fit her swollen foot, due to the severity of her condition. Doctors in the hospital carried out an initial assessment to confirm that she didn’t have any infections, and therefore did not require any medication and she then joined the training programme at the hospital.
At the self care training centre, Puna learned methods for lymphoedema management including exercises, massage, breathing techniques and hygiene, she was also given a pair of customised shoes which will help to prevent infections. At the end of her week-long stay at the training centre, Puna reported that she had enjoyed learning exercises, engaging in group discussions as well as learning about leprosy.
Puna attends school, and while she doesn’t feel that she experiences any stigma from the other students because of her condition, her lymphoedema does restrict her participation in certain activities such as sports and dancing. Puna reported that when she is alone, she sometimes worries about her future and who will marry her, because of her condition.
Before attending the self care training centre, Puna was not aware of the cause of her lymphoedema, and did not know that there were services available to manage her condition. Now that she has received training and support, Puna will continue to carry out the self-care methods herself at home. The knowledge she has gained gives Puna hope for the future, that she will now be able to manage her condition.