Scleroderma is an autoimmune disease that hardens and tightens the skin and connective tissues. In some people, the disease also targets other organs. Consultant Rheumatologist, Dr Gaone Ditlotlo says advocacy is important to not only make those affected by this condition feel seen and supported, but it also raises awareness so that scleroderma is part of a national conversation that can result in access to specialised healthcare being improved for patients.

June is Scleroderma awareness month and June 29th is World Scleroderma Day. Dr Ditlotlo who has over 17 years of experience, dealing with musculoskeletal system and autoimmune diseases such as Rheumatoid arthritis, Gout, Back pain and many others, explains that scleroderma belongs to the group of disease called “auto-immune disease” which essentially refers to the body being at war with itself.”

The normal defence cells of the body, white blood cells or immune competent cells, turn their ammunition on the body; rather than on germs, our eternal enemies. Autoimmune diseases can affect any part of the body right from the head to the toes and all organs and structures in between. This condition is also classified as connective tissue disease. It is estimated that there are 2.5 million people with scleroderma worldwide.

She stressed the need to raise awareness and understanding about the condition across the world among the general population and healthcare professionals. “Lack of awareness of the condition among healthcare professionals leads to delayed diagnosis, which can result in serious and potentially life-threatening consequences for people with scleroderma,” she said. Dr Ditlotlo stated scleroderma like other autoimmune disease, may be caused by interplay of genes and certain environmental factors.

“Many environmental factors have been associated with the occurrence of systemic sclerosis including silica dust - intensively described in gold and coal miners, organic chemicals like paraffin and toxic oils and drugs, vinyl chloride used in the manufacturing of plastics”. Symptoms of the condition vary from patient to patient, according to Dr Ditlotlo, adding that some may have mild symptoms with just skin problems, while others may have skin problems with life threatening internal organs involvement. Occasionally, there may not be skin problem but patient has internal organs challenges. “Some of the earliest symptoms include, Raynaud’s symptoms, fingers or toes colour changes on exposure to cold accompanied by burning; hand and feet swelling; Sclerodactyly. Thickened skin of the fingers or toes. Affected skin can become darker or lighter in colour and may look shiny and smooth because of tightness. “Affected skin also has hair loss and loses skin creases and ability to sweat and hence becomes dry. Arthritis, joint contracture or deformity, finger ulcers or wounds and scar tissues in the lung, heart, stomach. The Kidney can also be affected, which is called scleroderma renal crisis,” she said. “Many scleroderma symptoms resemble the symptoms of several conditions, and this may result in delayed diagnosis in most cases. It is crucial to diagnose and treat Scleroderma at an early stage where therapeutic interventions can prevent development of organ damage. Scleroderma is associated with increased morbidity and mortality and early diagnosis helps improve prognosis,” Dr Ditlotlo explained.

Dr Ditlotlo said while there is no cure for scleroderma, there are treatments that can control symptoms and prevent complications. The choice of treatment used depends on organs involved. Since most people have not heard of scleroderma, Dr Ditlotlo says it is crucial that healthcare professionals and patients with the condition spread the word about it. “Communities must have conversations about this rare disease. Joining patient support groups for Autoimmune conditions will help affected individuals meet other patients and families affected by autoimmune diseases.

“There are currently limited resources for most patients with autoimmune diseases hence the need to continue raising awareness about them,” she said.