Background/Purpose: Growing up in the small island of Mauritius, I received the unexpected diagnosis of lupus at the young age of 13. The journey that followed was an arduous one filled with perseverance and survival. During these past 22 years, I have been overwhelmed with feelings of hopelessness. The hardest aspect of having lupus as a teen is the inevitable sense of isolation from the normal world. Living with lupus is challenging and disturbing from the moment of diagnosis. There were times when my condition did not allow me to attend school or pain and other physical restrictions prevented me from participating in school activities. I felt frightened, angry and depressed but with the support of my mother, I soon realised that living a life paralysed with fear was not living at all. Gradually, I had to accommodate my life to this dreadful disease, to adjust to the impact of strong daily medications and to resolve stress, pain, depression and fatigue.

Treatment: It took me two to three years to get to grips with lupus, but my grasp was strengthened by contact with other people who have the disease. Life with lupus is a Journey. Throughout the years, I found out that sharing my story with others helped in ending the isolation and depression created by the disease. I, therefore, made it a priority to educate others and raise consciousness about lupus and other autoimmune diseases. Passionate about this awareness, my goal has been to ensure that all the work achieved ultimately benefited every individual affected by Lupus.

Maintenance: In 2000, my mother, Babs and I founded Lupus Alert, a non-profit organization in Mauritius providing moral, emotional and financial support to people living with lupus as well as spreading awareness of the disease to the public. Our goal is to provide lupus education to others including teachers, friends, family members and even health and government professionals who are not aware of its symptoms and complications. Lupus Alert also provides patient services and community awareness promotion to advance research initiatives.

Quality of Life: Lupus awareness in Mauritius has become a passion for me and all the work achieved has ultimately benefitted every individual who is touched by this disease. As a patient, I encourage other patients to accept and talk openly about their illness. By providing a network of support for patients throughout the island I have been able to reach out to patients and their families teaching them how to manage and cope with lupus and provide the best opportunity for improving quality of life for patients and for controlling morbidity and mortality. In Mauritius, it has been particularly difficult to make the Health Authority recognise lupus as a significant public health issue. Through a wide awareness campaign, we have been able to create a synergy which today responds to the needs of those affected by this destructive illness. The mutual confidence between physicians and patients has improved and proved to be a large element in the effectiveness and the economy of healthcare. The next step now is to continue enhancing the progress made in creating local awareness about the disease and strengthening the position of Lupus Alert as a beacon of hope and support for the entire community of lupus patients in Mauritius and beyond.

« Back to 2019 ACR/ARP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/journeying-towards-hope-making-a-difference-in-the-lives-of-lupus-patients-in-mauritius/