What is Scleroderma? When is National Scleroderma Awareness Month?

Scleroderma is a chronic autoimmune disease that involves the hardening and tightening of the skin and connective tissues. The word “scleroderma” comes from the Greek words “sclero” (meaning hard) and “derma” (meaning skin). This condition is characterized by an overproduction of collagen, a protein that forms the building blocks of connective tissues in the body.

There are two main types of scleroderma: localized scleroderma and systemic scleroderma (also known as systemic sclerosis).

  1. Localized Scleroderma:
    • Localized scleroderma primarily affects the skin and, in some cases, underlying tissues and muscles. It usually doesn’t affect internal organs.
    • There are two subtypes of localized scleroderma: morphea, which causes patches of hardened skin, and linear scleroderma, which involves a line or band of hardened skin.
  2. Systemic Scleroderma (Systemic Sclerosis):
    • Systemic scleroderma is more severe and can affect not only the skin but also internal organs such as the digestive system, lungs, kidneys, and heart.
    • It can be further classified into limited cutaneous systemic sclerosis and diffuse cutaneous systemic sclerosis, based on the extent of skin involvement.

The exact cause of scleroderma is unknown, but it is believed to involve a combination of genetic, environmental, and immune system factors. Common symptoms of scleroderma include thickened and hardened skin, Raynaud’s phenomenon (which causes the fingers and toes to become cold and numb in response to cold temperatures or stress), joint pain, digestive problems, shortness of breath, and fatigue.

Diagnosis of scleroderma typically involves a physical examination, blood tests to check for specific antibodies associated with the disease, imaging tests, and sometimes a skin biopsy. Treatment aims to manage symptoms, slow the progression of the disease, and prevent complications. Medications, physical therapy, and lifestyle modifications may be recommended to help improve quality of life for individuals with scleroderma.

Since scleroderma can vary widely in its severity and how it affects different individuals, treatment plans are often tailored to each person’s specific symptoms and needs. It’s essential for individuals with scleroderma to work closely with healthcare professionals, including rheumatologists and dermatologists, to monitor the condition and manage symptoms effectively.

Senior man looking out of window at home

National Scleroderma Awareness Month is an annual observance dedicated to raising awareness about scleroderma, a chronic autoimmune disease characterized by the hardening and tightening of the skin and connective tissues. This month-long campaign typically takes place in June and serves as an opportunity to educate the public about the symptoms, challenges, and impact of scleroderma on individuals and their families.

During National Scleroderma Awareness Month, various organizations, patient advocacy groups, healthcare professionals, and individuals affected by scleroderma come together to spread awareness through activities such as:

  1. Education and Information: Providing information about scleroderma through educational materials, online resources, and community events helps increase understanding of the disease among the general public and healthcare professionals.
  2. Support and Advocacy: National Scleroderma Awareness Month offers a platform for individuals living with scleroderma and their caregivers to share their stories, connect with others facing similar challenges, and advocate for improved research, treatment options, and support services.
  3. Fundraising and Research: Many organizations use this month as an opportunity to raise funds for scleroderma research, which aims to better understand the underlying causes of the disease, develop more effective treatments, and ultimately find a cure.
  4. Community Engagement: Community-based events, such as walks, runs, support group meetings, and awareness campaigns, help foster a sense of solidarity among individuals affected by scleroderma and their supporters.

By shining a spotlight on scleroderma during National Scleroderma Awareness Month, the goal is to increase early detection, improve access to care, reduce stigma, and ultimately enhance the quality of life for those living with this challenging condition. Whether it’s sharing information on social media, participating in awareness events, or supporting fundraising initiatives, everyone can play a role in raising awareness and making a difference in the fight against scleroderma.