Scleroderma
Scleroderma, which literally means 'hard skin', is a rare, chronic rheumatic condition in which the connective tissue in the skin and/or internal organs hardens.
Two main types of scleroderma
There are two main forms: systemic scleroderma (or systemic sclerosis), which also affects organs such as the heart, lungs, and kidneys, and localized scleroderma, which affects only the skin. Both forms lead to physical limitations and have a significant impact on quality of life.
Rare variant
A very rare variant is systemic scleroderma sine scleroderma, in which organs are affected without the skin hardening. The disease primarily affects women (about 80%) and usually appears between the ages of 30 and 50. Early symptoms include the Raynaud phenomenon — a condition in which fingers turn white and become painful — as well as fatigue, muscle pain, and joint stiffness. Diagnosis is often difficult because the symptoms are nonspecific and overlap with other conditions. Blood tests and further examinations are essential for an accurate diagnosis.
Scleroderma Framed Foundation
The Scleroderma Framed foundation has been working for over 15 years to raise awareness of scleroderma. Through portrait photography of people with both the systemic and localized forms of the condition, the foundation aims to increase awareness and contribute to faster recognition and diagnosis. Especially during the COVID-19 pandemic, it became clear how vulnerable people with scleroderma are, partly due to immunosuppressive medication and affected lungs.
More information
More information can be found at ReumaNederland.nl and NVLE.org, the patient association for scleroderma, lupus, MCTD, and APS. Awareness, early recognition, and targeted care are essential for a better quality of life for people with this impactful disease.
