World Scleroderma Awareness Day is observed on June 29 to raise awareness of this rare autoimmune disease that affects connective tissue, skin, and internal organs. The day also highlights the importance of early diagnosis, patient support, and medical research.

Scleroderma, also known as systemic sclerosis, is a rare autoimmune connective tissue disease that causes thickening and hardening of the skin, and in more severe cases, affects internal organs such as the lungs, heart, esophagus, and kidneys. The name comes from Greek: “skleros” = hard, “derma” = skin. It is more common in women between the ages of 30 and 50, with an incidence of 3–12 cases per million people.

The main cause is excessive collagen production, leading to scarring of the skin and internal organs. There are two forms of the disease: limited (mainly affecting the skin on the hands and face) and diffuse (which progresses more rapidly and involves internal organs).

An early symptom is Raynaud’s phenomenon—color changes and numbness in the fingers triggered by cold. Other symptoms may include skin thickening, stiffness, a mask-like facial appearance, swallowing difficulties, red spots (telangiectasias), and calcium deposits on the fingers. In more severe cases, patients may develop lung fibrosis, pulmonary hypertension, kidney, and heart problems.

Diagnosis is based on symptoms, the presence of specific antibodies (ANA, anti-Scl-70, anticentromere), and organ function tests. Medications such as immunosuppressants, corticosteroids, and vasodilators help relieve symptoms. While there is no cure that can completely stop the disease, early diagnosis, a multidisciplinary approach, and proper care can significantly improve quality of life.

The Croatian Association of People with Scleroderma (HUOS) is a humanitarian organization founded on June 16, 2010, with the aim of supporting patients and their families. The association brings together patients, citizens, and professionals, promoting awareness of the disease, early diagnosis, and access to therapy. It offers counseling, education, and psychosocial support and collaborates with experts both in Croatia and abroad. HUOS’s vision is a community where those affected are not alone but supported and understood.

Croatian Scleroderma Association

Mob: 098/209 267

Mail: huos@huos.hr / sklerodermija@huos.hr

Web: https://huos.hr/

This content was developed with the financial support of the Ministry of Health. The content of this document is the sole responsibility of the Croatian Alliance for Rare Diseases and can under no circumstances be regarded as reflecting the views of the Ministry of Health.