Who we are
The Scleroderma Framed Foundation was founded by Jessica Thonen-Velthuizen, who was diagnosed with scleroderma at the age of 28. We aim to raise awareness of scleroderma in a positive and artistic way: a rare, serious, autoimmune condition that affects the skin and internal organs.
In the spotlight
Jessica, the founder of the Scleroderma Framed Foundation:
"When I was 28, I was diagnosed with scleroderma. Scleroderma is a rare, serious, rheumatic condition caused by a defect in the immune system and, to date, has no cure. Due to the formation of connective tissue (hardening) in the skin and internal organs (such as the heart and lungs), this disease not only causes pain and limitations, but can also lead to life-threatening situations. The lack of awareness of this condition not only among healthcare professionals, but among the general public as well, means that the diagnosis is often made late, or too late.
It was precisely this lack of awareness among the people around me, that inspired me to raise awareness of scleroderma in a positive and artistic way. It resulted in The Scleroderma Framed Foundation. What began back in 2006, during my stem cell transplant, as a simple idea, has grown into a major photography exhibition, two books, national and internal acclaim, and a foundation with more than 20 volunteers."
Hans-Peter, photographer
In 2008, Jessica joined forces with the famous (pop music) photographer Hans-Peter van Velthoven. Hans-Peter has already captured more than 100 individuals with scleroderma on camera in his own unique style. The aim of the photo shoot is to capture the person behind the scleroderma condition. As the skin tightens, the appearance of people with scleroderma can change significantly. Both the physical change and the seriousness of the condition have a major impact on those affected. Hans-Peter possesses the skill to make the person and their character shine through in his photographs, allowing the models to recognise themselves again.
"When I was 28, I was diagnosed with scleroderma. Scleroderma is a rare, serious, rheumatic condition caused by a defect in the immune system and, to date, has no cure. Due to the formation of connective tissue (hardening) in the skin and internal organs (such as the heart and lungs), this disease not only causes pain and limitations, but can also lead to life-threatening situations. The lack of awareness of this condition not only among healthcare professionals, but among the general public as well, means that the diagnosis is often made late, or too late.
It was precisely this lack of awareness among the people around me, that inspired me to raise awareness of scleroderma in a positive and artistic way. It resulted in The Scleroderma Framed Foundation. What began back in 2006, during my stem cell transplant, as a simple idea, has grown into a major photography exhibition, two books, national and internal acclaim, and a foundation with more than 20 volunteers."
Hans-Peter, photographer
In 2008, Jessica joined forces with the famous (pop music) photographer Hans-Peter van Velthoven. Hans-Peter has already captured more than 100 individuals with scleroderma on camera in his own unique style. The aim of the photo shoot is to capture the person behind the scleroderma condition. As the skin tightens, the appearance of people with scleroderma can change significantly. Both the physical change and the seriousness of the condition have a major impact on those affected. Hans-Peter possesses the skill to make the person and their character shine through in his photographs, allowing the models to recognise themselves again.
Late diagnosis
Scleroderma is a condition that is often little-known, which often results in delayed diagnosis. Through our portraits, we hope to raise awareness of scleroderma, thereby helping people to recognise the signs of the disease. Early diagnosis can have a significant impact on the quality of life of an individual with scleroderma.
Scleroderma in focus
Our portrait photos give a face to people with scleroderma, capturing the person behind the condition. Together, the photographs form a touring exhibition, called "Scleroderma in Focus". To date, more than 100 people from various countries have posed in front of Hans-Peter van Velthoven's camera. The exhibition has been shown at national and international venues, such as hospitals, symposia and conferences. In addition, the portraits have been compiled and arranged in two photo books.
The foundation and its activities
Our foundation has a team of more than 20 volunteers, each with their unique expertise and contribution to make. Our main activity is our touring exhibition 'Scleroderma in Focus'.
Immerse yourself in the exhibition and experience that you are looking at people, not a disease.
Our volunteers organise the photo shoots, the exhibition and our stand, and take care of PR and social media activities. In addition to our regular photographer and our make-up artist, the scientific community has also been involved in our work. Together, we are fully committed to all our activities.
An important scientific contribution has been made by Prof. Dr Frank van den Hoogen, emeritus professor, and Dr Linda Kwakkenbos. Their research showed that the photo shoot and the final result helped the models with scleroderma to build a more positive self-image.
Immerse yourself in the exhibition and experience that you are looking at people, not a disease.
Our volunteers organise the photo shoots, the exhibition and our stand, and take care of PR and social media activities. In addition to our regular photographer and our make-up artist, the scientific community has also been involved in our work. Together, we are fully committed to all our activities.
An important scientific contribution has been made by Prof. Dr Frank van den Hoogen, emeritus professor, and Dr Linda Kwakkenbos. Their research showed that the photo shoot and the final result helped the models with scleroderma to build a more positive self-image.
Raising awareness of scleroderma
By bringing together art, photography and personal stories, we try to raise awareness of scleroderma and promote early diagnosis.
Collaboration
Where possible, we work in partnership with national and international organisations, such as the Dutch NVLE, ReumaNederland, FESCA (an umbrella group of European scleroderma patient organisations) and Stichting het Sclerodermie Fonds (The Scleroderma Fund Foundation).
By joining forces, we aim to raise awareness, speed up diagnosis and improve quality of life for people with scleroderma.
For more information on scleroderma, please refer to:
By joining forces, we aim to raise awareness, speed up diagnosis and improve quality of life for people with scleroderma.
For more information on scleroderma, please refer to:
- ReumaNederland
- NVLE, the Dutch National scleroderma, lupus, MCTD and APS Association
- FESCA, comprising a number of European scleroderma patient organisations
- Stichting het Sclerodermie Fonds
