Edycs Epilepsy Group, Mauritius
Project: Promoting Complementary & Alternative Medicines – Massage Therapy Patients Training Program
Edycs Epilepsy Group (Mauritius) was founded in December 1997 and is a mature organization with a proven track record in Mauritius, having successfully carried out a number of projects. Projects implemented include training workshops for people with epilepsy, affiliates and volunteers, a residential therapy program, educational support to children with epilepsy and more recently the Epilepsy Distance Learning Program. Edycs Epilepsy Group is among the few non-governmental organizations that have received awards for its voluntary services in the country.
The quality of life for many adults with refractory epilepsy is compromised. Statistics and observations at Edycs Epilepsy Health Service Center show 48 adults with refractory epilepsy. As at 30 September 2006, the epilepsy population (those registered at Edycs Epilepsy Center aged 01 to 70) numbered 550. People with refractory epilepsy are treated in the General Hospitals and despite real advances in the pharmacological sector, these patients have rarely referred to specialists as there is a lack of epilepsy specialists in the country. They have been on the same medication using first line drugs for years, as second line drugs and new ones are available only in private pharmacies at high cost.
Since joining the Edycs Epilepsy Center, new medication has been prescribed by the neurologist and provided free of charge. The outcome, despite prescribing new drugs, reveals uncontrolled seizures among these patients which is believed to be associated with long inappropriate treatment, late diagnosis and unchanged drugs over a number of years.
Refractory epilepsy is a serious health problem constituting a major threat that often prevents people with epilepsy from managing daily tasks and activities. Psychiatric co-morbidity, in particular depression and anxiety, are common in people whose epilepsy most often remains untreated. Stigma remains a significant part of the burden of refractory epilepsy.
Unemployment is relatively high among people with refractory epilepsy due to uncontrolled seizures. In an effort to improve the quality of life and the acceptance of the people with refractory epilepsy, a collaboration with the Massage Therapy Clinic remains a treatment alternative. The development of a training program and materials, involving families of people with refractory epilepsy as participants, aims to create opportunities for them to learn to master the basic techniques in the application of massage therapy as a proven rehabilitation program in the relief of stress, pain and tension associated with seizures. Massage is deeply relaxing and at the same time profoundly invigorating because it helps reduce pain and tension resulting in seizure reduction.
Providing training in applying massage therapy to people with epilepsy at home, and at no cost, is a new challenge to improving quality of life. Coping skills expand to display courage, coping with seizures and managing tension and stress effectively.
Supported by their families at home, working towards no seizures and no side-effects, is conducive to the well being of people with epilepsy. The Medication Fund at Edycs will make provision for essential massage oils purchased from the Massage Therapy Clinic at nominal cost to be distributed thereafter to those families in which the therapy proved successful. The 2 staff members joining the training program will be required to provide essential information about massage therapy to future trainees and their families and to conduct small training demonstrations.
The objectives of the training program:
- To promote Massage Therapy as an alternative treatment care for people with uncontrolled seizures along with stress, depression and fatigue
- To empower through training families of people with refractory epilepsy in understanding massage therapy and its benefits, mastering massage techniques and its application.
Persons with epilepsy applying massages at home to see a lowering of seizures and reduced levels of stress, fatigue and depression so that ultimately their quality of life is improved allowing them enjoy a social life and to play a prominent role as active and productive citizens in the community.