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June is National Scleroderma Awareness Month

Written by Sotera Digital Health | Jun 13, 2023 2:00:00 PM

National Scleroderma Awareness Month is observed annually in June. Scleroderma is a chronic autoimmune connective tissue disease characterized by excessive collagen production. This causes the epidermis and internal organs to harden and thicken. There is no known cause or cure for scleroderma. It is challenging to diagnose because its symptoms are similar to those of other diseases. There are two primary scleroderma varieties. The hardening of the epidermis caused by diffuse scleroderma affects internal organs such as the heart, kidneys, and lungs. The internal organs are less likely to be affected by limited scleroderma, and the skin hardening is not as severe.

 

History of Scleroderma Awareness Month

Scleroderma is derived from the Greek words 'skleros' and 'derma,' which mean 'hard skin.' Around 400 B.C., Hippocrates, the founder of medicine, described individuals affected by this condition. Not until the 1700s did physicians begin to investigate this condition seriously. Utilizing a combination of vapor baths and low doses of quicksilver, treatments at the time centered on restoring the epidermis to normal condition and increasing its flexibility.

Physicians had identified the systemic manifestations of scleroderma by the late 19th century. In 1854, Dr. Thomas Addison was the first to describe various forms of scleroderma. Localized scleroderma, which he referred to as morphea, affected the epidermis but not the internal organs. Skin, blood vessels, and internal organs were affected by systemic scleroderma. Dr. Auguste Gabriel Maurice Raynaud expanded on this in 1863 when he identified Raynaud's syndrome. This condition inhibited blood supply to the fingers and toes, causing discoloration, tingling, and pain. The findings of Raynaud inspired the R in CREST syndrome, a type of scleroderma. Around 90 percent of scleroderma patients are now known to have Raynaud's syndrome.

Since 1998, the National Scleroderma Foundation (N.S.F.) has been committed to educating the public about this rare autoimmune disease and raising awareness. National Scleroderma Awareness Month, sponsored by the National Scleroderma Foundation and other scleroderma organizations, aims to raise awareness of this disease. This holiday promotes advocacy, fundraising, research, support groups, and programs of public awareness for this cause.

 

Understanding Scleroderma

Scleroderma is a rare and chronic autoimmune disease characterized by the hardening and tightening of the skin and connective tissues. This condition affects multiple organ systems, leading to a range of symptoms such as skin thickening, joint pain, digestive problems, lung complications, and vascular issues. Scleroderma is a complex disease with varying degrees of severity, and its exact cause remains unknown. However, early diagnosis and comprehensive management can significantly improve patient outcomes.

 

Scleroderma: Statistics and Prevalence

According to the National Scleroderma Foundation, it is estimated that about 300,000 Americans have scleroderma. About one-third of those people have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis can be difficult. There may be many misdiagnosed or undiagnosed cases.

Localized scleroderma is more common in children, whereas systemic scleroderma is more common in adults. Overall, females with scleroderma outnumber males about 4-to-1. Other factors, such as race and ethnic background, may determine the risk of getting scleroderma, the age of onset, and the pattern or severity of internal organ involvement. The reasons for this are not clear. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases.

Scleroderma can develop in every age group, from infants to the elderly, but its onset is most frequent between the ages of 25 to 55. When doctors say “usually” or “for the most part,” the reader should understand that variations frequently occur. Many people get alarmed when they read medical information that seems to contradict their own experiences and conclude that what has happened to them is not supposed to happen. There are many exceptions to the rules in scleroderma, perhaps more so than in other diseases. Each case is different, and information should be discussed with your own doctor.

In African American individuals, the incidence of systemic sclerosis is higher than it is in non-African Americans. Among all African Americans, 23.7 people per million are diagnosed with systemic sclerosis, while the comparable rate among non-African Americans is 18.3 people per million diagnosed. We see a similar pattern when looking at the prevalence of systemic sclerosis among African-Americans contrasted with non-African-Americans.

The progression of the disease in African Americans can be different than in non-African Americans due to differences in autoantibodies. Generally speaking, African Americans are diagnosed at a younger age than non-African Americans are diagnosed. Additionally, African Americans far more frequently have the diffuse cutaneous form of systemic sclerosis and are more likely to have lung and other organ involvement than occurs among non-African Americans.

 

The Impact of Scleroderma

Living with scleroderma can present significant challenges for individuals, as well as their families and caregivers. The symptoms and complications associated with the disease can have a profound impact on one's quality of life, physical function, and emotional well-being. Tasks that were once taken for granted, such as dressing oneself, gripping objects, or participating in daily activities, may become difficult or impossible.

 

Raising Awareness for Scleroderma

National Scleroderma Awareness Month provides an important platform to bring attention to this often-misunderstood disease and generate support for those affected. By increasing awareness, we can help reduce misconceptions, improve access to resources, and foster empathy and understanding. Here are some ways we can actively participate:

 

Education and Information

Share educational materials and resources about scleroderma on your website, social media channels, and within your healthcare network. Help dispel myths and provide accurate information about the disease, its symptoms, and available treatment options.

 

Fundraising and Support

Collaborate with local scleroderma organizations and contribute to their fundraising efforts. Support initiatives such as research programs, patient support groups, and awareness campaigns. Every contribution counts in the pursuit of improved treatments and a cure.

 

Patient Stories and Advocacy

Share stories of individuals living with scleroderma, highlighting their triumphs, challenges, and experiences. Encourage patients and their families to become advocates, empowering them to share their journey and raise awareness in their communities.

 

Collaboration with Healthcare Professionals

Work closely with healthcare professionals, including rheumatologists, dermatologists, and pulmonologists, to develop innovative solutions that can enhance the care and monitoring of patients with scleroderma. Wireless vital sign monitors, for instance, can provide real-time data on vital signs, facilitating timely interventions and personalized treatment plans.

 

The Sotera Commitment

As we recognize June as National Scleroderma Awareness Month, we have an opportunity to unite in support of individuals living with scleroderma and their families. By raising awareness and promoting understanding, we can make a significant impact on their journey towards improved quality of life and access to comprehensive care.

Scleroderma is a complex autoimmune disease that affects multiple aspects of a person's life, from their physical well-being to their emotional and social experiences. By educating ourselves and others about the disease, we can dispel misconceptions, reduce stigma, and create a more supportive environment for those affected.

As a manufacturer of wireless vital sign monitors for hospitals, Sotera Digital Health recognizes the importance of improving patient care and outcomes for individuals living with scleroderma. Our advanced monitoring technology can play a vital role in supporting healthcare professionals in managing this complex disease.

Let us stand together in raising awareness for scleroderma and advocating for improved care and support. Together, we can make a difference in the lives of those affected by scleroderma, working towards a future where comprehensive treatment options are available, and where every individual living with the disease receives the understanding, compassion, and care they deserve.