(RxWiki News) For people with lesser-known diseases, lack of public awareness can be a major roadblock to funding research to fight the disease and creating resources to help patients thrive.
That is why recognizing June as National Scleroderma Awareness Month has been a fifteen-year tradition for organizers and for patients coping with this chronic skin condition.
"Talk to a dermatologist about any changes in your skin’s appearance."
According to the National Institute of Arthritis and Musculoskeletal Skin Disease (NIAMS), the word scleroderma means, at its root, “hard skin.”
“Although it is often referred to as if it were a single disease, scleroderma is really a symptom of a group of diseases that involve the abnormal growth of connective tissue, which supports the skin and internal organs,” explains the NIAMS.
In some cases, patients may experience external symptoms like hard, tight or waxy areas on the skin. Other forms of the condition are more internal, and blood vessels and organs like the kidneys or heart can be affected.
The Scleroderma Foundation, the organizing group behind this month’s events, reports that lung problems are a common and serious complication that can occur with the condition. Lung disease is the most frequent cause of death related to scleroderma.
According to the NIAMS, due to the broad nature of the disease, a variety of types of doctors and specialists may be required to both diagnose scleroderma and to treat it. And while treatments and medications can help ease some symptoms of scleroderma, the Scleroderma Foundation reports there is no cure for the disease.
The foundation estimates that around 300,000 people in the US have scleroderma, a number comparable to the amount of people with multiple sclerosis. The disease is more common in women, and while it can strike at any age, scleroderma frequently sets in between ages 25 and 55.
In an effort to increase public knowledge of the condition, the Scleroderma Foundation is asking its supporters to “...reach out to various influential individuals on social media networks to make them aware that more support and resources are needed for the scleroderma community.”
The organization summed up their aims to increase knowledge, funding, research for a cure and resources for patients in a light-hearted phrase: “Help us put an end to ‘sclero-what?’”