Scleroderma
Scleroderma — rare, serious and often recognised too late
Scleroderma literally means "hard skin". Scleroderma is a rare, chronic rheumatic condition that causes hardening of the connective tissue in the skin and sometimes in the internal organs.
Scleroderma literally means "hard skin". Scleroderma is a rare, chronic rheumatic condition that causes hardening of the connective tissue in the skin and sometimes in the internal organs.
Big impact
Starting with seemingly harmless symptoms, it can develop, in the case of systemic scleroderma and depending on which organs are affected and to what extent, into a life-threatening condition. This is precisely why early diagnosis is of vital importance.
However, because of its rarity and the fact that it not widely known, scleroderma is often diagnosed late. Symptoms are not always immediately linked to this condition, meaning that valuable time is lost. And with scleroderma, time can make all the difference.
Greater awareness means:
However, because of its rarity and the fact that it not widely known, scleroderma is often diagnosed late. Symptoms are not always immediately linked to this condition, meaning that valuable time is lost. And with scleroderma, time can make all the difference.
Greater awareness means:
- Earlier detection
- Early treatment
- Better quality of life
- Higher chances of survival
Different forms of scleroderma
There are two main forms of scleroderma: localised scleroderma, which affects only the skin, and systemic scleroderma (or systemic sclerosis), which can also affect organs such as the heart, lungs, kidneys and gastrointestinal tract. Both forms lead to physical limitations and have a major impact on quality of life.
A very rare form is systemic scleroderma sine scleroderma, in which organs are affected without the hardening of the skin. An accurate diagnosis is often hard to make, as symptoms are non-specific and resemble those of other conditions. Blood tests and further investigations are essential for getting the correct diagnosis.
The Scleroderma Framed Foundation focuses on portraying people with both systemic and localised forms of the condition, in order to present a comprehensive picture of scleroderma.
A very rare form is systemic scleroderma sine scleroderma, in which organs are affected without the hardening of the skin. An accurate diagnosis is often hard to make, as symptoms are non-specific and resemble those of other conditions. Blood tests and further investigations are essential for getting the correct diagnosis.
The Scleroderma Framed Foundation focuses on portraying people with both systemic and localised forms of the condition, in order to present a comprehensive picture of scleroderma.
Early signs of Systemic Sclerosis
Raynaud's phenomenon is often an early sign of systemic sclerosis, a condition in which the fingers turn white and become painful when exposed to cold or stress. Other early signs include fatigue, muscle pain, joint stiffness and swollen hands. Dry mucous membranes, the feeling that food is hard to swallow, or unexplained weight loss may also be warning signs.
The condition mainly affects women (around 80%) and usually manifests itself between the ages of 30 and 50.
The condition mainly affects women (around 80%) and usually manifests itself between the ages of 30 and 50.
Scleroderma Framed Foundation
Ever since 2008, the Scleroderma Framed Foundation has been working to raise awareness of scleroderma. Through portrait photography of people with both systemic and localised forms of the condition, the Foundation aims to increase awareness and contribute to earlier detection and diagnosis.
More information about scleroderma
For more information about scleroderma, please visit ReumaNederland.nl or NVLE.org. (The NVLE is the Dutch Organisation for people with Lupus (SLE), APS, Scleroderma and MCTD.)
