June 29: World Systemic Sclerosis (Scleroderma) Day

Artwork By Paul Kleen

Klee was diagnosed with scleroderma at 57 in 1936. His health declined, leading to his death in 1940. Despite decreased productivity after his diagnosis, he adapted his style and created over 1,000 works in his final years. His legacy not only inspires the art world but also reminds us of the resilience of individuals battling this condition.

What Is Systemic Sclerosis (Scleroderma)?

Systemic Sclerosis also known as Scleroderma, is a chronic autoimmune disease characterized by hardening and tightening of the skin and connective tissues. Scleroderma, meaning “hard skin,” comes from the Greek words “sclero” (hard) and “derma” (skin), first named in the 18th century by Italian physician Carlo Curzio. The name refers to the thickening and hardening of the skin, the most visible feature of the disease. It was later discovered that this autoimmune disease can also affect internal organs through excessive collagen production.

Systemic Sclerosis can affect the skin, internal organs, blood vessels, and the immune system. While its exact cause remains unknown, it is linked to abnormal immune responses and overproduction of collagen, a protein that forms connective tissue.

There are two primary types of scleroderma:

• Localized Scleroderma: Limited to the skin and sometimes underlying tissues; less severe but still impactful.
• Systemic Scleroderma: Affects not only the skin but also vital organs such as the lungs, heart, kidneys, and digestive system, making it potentially life-threatening.
  

AiArthritis Disease Symptoms

Symptoms of Systemic Sclerosis

Symptoms vary greatly among individuals but may include:

• Hardening and tightening of the skin
• Swelling and itchiness
• Small red spots: (telangiectasia) on their hands and face
• Calcium deposits: form under the skin, particularly at the fingertips, causing bumps that can be seen on X-rays
• Raynaud's phenomenon: Fingers and toes that turn white or blue when exposed to cold or during stressful periods
• Heartburn
• Difficulty swallowing
• Gastrointestinal symptoms: bloating, diarrhea, constipation, fecal incontinence
• Shortness of breath
• Decreased exercise tolerance
• Dizziness
• Pulmonary hypertension
• Irregular heartbeat
  

Patient Perspective On Living With Systemic Sclerosis

The Significance of World Systemic Sclerosis (Scleroderma) Day

World Systemic Sclerosis (Scleroderma) Day serves several crucial purposes:

• Awareness: Many people, including some healthcare professionals, may not fully understand the complexities of scleroderma. This day highlights the need for early diagnosis and comprehensive care.
• Advocacy: Patients often face challenges related to access to affordable treatment and specialized care. The day encourages policy changes to support those with Systemic Sclerosis.
• Support and Solidarity: The global community unites to show solidarity with patients, their families, and caregivers, letting them know they are not alone in their journey.
• Research and Funding: The day underscores the need for ongoing research to uncover the underlying causes of Systemic Sclerosis and develop better treatments or a cure.
  

How to Participate in World Systemic Sclerosis (Scleroderma) Day

• Raise Awareness: Share educational content on social media using hashtags like #WorldSclerodermaDay or #SclerodermaAwareness and #TealTalk
• Attend or Host Events: Participate in virtual or in-person walks, seminars, or fundraisers to support scleroderma advocacy groups.
• Support Patients: Reach out to someone living with scleroderma to offer encouragement or help in their daily life.
• Donate: Contribute to organizations funding scleroderma research and providing resources for patients and caregivers.

The Path Forward

While Systemic Sclerosis remains an incurable disease, significant progress has been made in understanding its mechanisms and improving patient care. World Systemic Sclerosis (Scleroderma) Day is a reminder of the importance of continued advocacy, research, and support for those living with this condition. Working together, we can create a world where Systemic Sclerosis patients feel seen, supported, and hopeful for the future.

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