Closing the Care Gap in Autoimmune Disease

In 2016, Jerome Samuel, the founder of the organization, was diagnosed with Dermatomyositis, a rare inflammatory disease which involves skin rash, inflammation and muscle weakness. His condition was only diagnosed after a year as autoimmune diseases are not easily diagnosed because a combination of tests and assessment of his symptoms had to be conducted.

Autoimmune disease is on the increase yet researchers do not know the exact cause of the disease. Diet, infections or exposure to chemicals are possible triggers of the disease.  Systemic and organ-specific autoimmune diseases include more than 100 conditions and are estimated to affect at least 5% of the world’s population, causing significant morbidity and mortality. The vast majority of studies on these diseases are performed in high-income countries creating the impression that autoimmune diseases are of little significance to middle and low-income countries. However, autoimmune diseases are highly relevant to developing countries and should be given the attention they deserve.

Unfortunately, many patients in developing countries do not receive appropriate medical care, and autoimmune diseases are either unrecognized or inappropriately treated. In South Africa, access to health care services is problematic due to financial constraints, there is a shortage of skilled nurses and physicians, rheumatologists are rare, and the availability of immunological diagnostic services are limited. Even when autoimmune diseases are suspected or diagnosed, the lack of patient education and the use of traditional medicine delay the initiation of treatment which is often too costly.

It is vitally important that diagnostic and therapeutic services along with increased awareness of autoimmune diseases by the patient, families of patients and the caregiver community be improved. Sustainable Care for Specialized Diseases was formed to encourage more people to learn about these diseases so that we all can contribute to support and improve the quality of life for these patients.