'Are there opportunities in
science to reveal the unknown
in rare diseases?'
'The models in the pictures radiate power.
This is characteristic for all activities
of the Scleroderma Framed Foundation.'
Scleroderma means “hard skin” and the hardening of the skin is the main characteristic of the disease.
The Scleroderma Framed foundation focuses both on the systemic form of scleroderma – systemic scleroderma or systemic sclerosis – and the localised form. Systemic scleroderma is a rare, chronic and serious condition characterised by the hardening of connective tissue in the skin and internal organs (such as the heart, lungs, gastrointestinal tract and kidneys). As a result of this hardening, these organs lose function, which can have a huge impact on the quality of life of those affected.
In addition to the systemic form of scleroderma, a localised form can be found, which affects the skin only, not the internal organs. The Scleroderma Framed foundation wants to portray both people with systemic and localised forms, to present a full picture of the many faces of scleroderma.
The hardening of the skin is the characteristic that systemic and localised scleroderma have in common. The changes in people’s physical appearance caused by it and the debilitating effects on their mobility also affect the quality of their lives.
A very rare form of scleroderma is called systemic sclerosis sine scleroderma, which causes the internal organs to harden but not the skin.
The Scleroderma Framed foundation’s mission is to raise public awareness of scleroderma, which might also lead to early symptom recognition and diagnosis.
Scleroderma is more common in women (80% of those affected are female) and the onset of the disease is most frequent between the ages of 30 to 50. Symptoms vary from person to person and most of the symptoms may also be caused by other diseases.
The onset of systemic scleroderma is marked by Raynaud’s Phenomenon in 90% of those affected, where blood vessels in the hands narrow during an attack and the fingers will get pale, stiff and painful. Other (early) symptoms of scleroderma include fatigue, pain and stiffness of muscles and joints.
Blood tests and comprehensive physical exams can support the diagnosis!
The Scleroderma Framed foundation has been helping to raise awareness of the disease for over ten years.
For more information about scleroderma, please refer to www.reumanederland.nl or www.nvle.org; the NVLE is the Dutch Organisation for people with Lupus (SLE), APS, Scleroderma and MCTD.
Please note these websites are mainly in Dutch.
The first photo book was created in response to the touring exhibition “Scleroderma in Pictures”, because many visitors to the exhibition were interested in seeing the portrait photographs again in one form or another after the exhibition.
Dr. Frank van den Hoogen, a professor who has been an advisor to the Scleroderma Framed foundation from the very start, then came up with the idea to publish the photographs in a book in response to this frequently asked question.
‘I’ll take it under my arm on a journey
With the exhibition expanding on a larger scale, the number of models was also increasing and the question was regularly asked “When could my portrait be included in a book?”
The 10th anniversary of the Scleroderma Framed foundation was the perfect time to celebrate the – by now – 100 + 1 models by including their portraits in a second photo book “10 years of scleroderma in pictures, 100+1 portraits” (‘10 jaar sclerodermie in beeld, 100+ 1 portretten’)
The two photo books are a collection of portrait photos by photographer Hans-Peter van Velthoven, and are supported by quotes of models and volunteers.
By purchasing our books, you’ll support the activities of the Scleroderma Framed foundation in raising awareness of scleroderma among the public.
HANS-PETER VAN VELTHOVEN HAS PORTRAYED PEOPLE WITH SCLERODERMA IN AN ARTISTIC WAY SINCE 2008. AT THE SAME TIME, A SCIENTIFIC RESEARCH STUDY WAS CONDUCTED INTO MODELS’ OWN BODY IMAGE ON THE INITIATIVE OF DR. FRANK VAN DEN HOOGEN, THE HEAD OF THE RHEUMATOLOGY DEPARTMENTS OF RADBOUDUMC HOSPITAL AND ST MAARTENSKLINIEK CLINIC. THE GREAT MAJORITY OF MODELS REPORTED THAT THEIR SELF-IMAGE HAD IMPROVED.
The portrait photos are really beautiful and offer an easy way to talk about about scleroderma and to provide more information about the disease.
Over the years, the exhibition has been shown around the world and can be seen in hospitals and at conferences and seminars. Our ambition is to show the portraits on an ongoing basis in order to raise more awareness of scleroderma.
Are you interested in having the exhibition or our stand at your organisation’s premises? Then please do not hesitate to contact us by email at expositie@sclerodermaframed.com.
The Scleroderma Framed foundation Stichting Scleroderma Framed is a Dutch scleroderma foundation that is represented by an enthusiastic group of over twenty volunteers, who joined forces to raise awareness of scleroderma among the public in a positive and artistic way. By taking portrait photos of people with scleroderma and exhibiting these photographs, we hope to reach a wider audience.
Jessica, founder of the Scleroderma Framed foundation
“When I was 28 years old, I was diagnosed with scleroderma. Scleroderma is a rare and serious rheumatic disease, which is caused by a defect in the immune system. To date, it has not been possible to find a cure for the disease. Because of the hardening of connective tissue in the skin and internal organs (such as the heart and lungs), the disease not only causes pain and disabilities, but can also develop into life threatening complications. Both health care professionals and the social environment of the individual affected are rather ignorant of the disease, and this is one of the reasons why the diagnosis is often made (too) late.”
This very ignorance of people’s social environments in particular inspired me to raise awareness of scleroderma among the public in a positive and artistic way. This led to the establishment of the Scleroderma Framed foundation. What just popped into my head during my stem cell transplant in 2006, has grown into a major photo exhibition, two books, national and international acclaim and a foundation staffed by 21 volunteers.
Hans-Peter, photographer
The famous pop music photographer Hans Peter van Velthoven and Jessica teamed up in 2008. By now, Hans-Peter has taken portrait photos of more than hundred people with scleroderma in his own authentic style. Underpinning all of his portraits is his ability to capture the person behind the disease. People’s appearances may change significantly because of the tightening of their skin. And this outward change in appearance has a lot of impact on the people affected by it, just as the seriousness of the disease has. Hans-Peter possesses the skill to let the person and their personality shine through his portrait photos; by achieving this, the models can recognise themselves again.
Frank, doctor of medicine
University professor Dr. Frank van den Hoogen has been involved with the foundation since 2010. He noticed the positive response the models showed to the photo shoot and the impact it had on their self-esteem. He initiated a scientific research study into the psychological effects of the photo shoot on the models. This study was carried out by Dr. Linda Kwakkenbos. The great majority of models said their self-image had become more positive after the photo shoot.
Our team
As a foundation, we organise all Scleroderma Framed activities together. In order to do so, we have several teams in place: a social media team, which supports our online activities; a team responsible for the exhibition & stands, which takes care of the exhibits in various locations all year round and is present at trade shows and conferences; a foundation board; external consultants, make-up artists and volunteers who offer their support at photo shoots and other events.
Activities
Our main activity is the touring exhibition “Scleroderma in Pictures”. Through it, we wish to convey the following message: Immerse yourself in the exhibition and try to feel that you are looking at human beings instead of cases of a disease.
All portrait photos are published in two books of photographs in support of the photo exhibition.
We regularly attend symposiums and conferences with our stand, which provides information about all our activities in general and scleroderma in particular.
Together we are strong
Scleroderma is a rare disease. In order to strengthen our efforts, we keep in touch with both national and international organisations that promote the interests of people with scleroderma in whatever form, or that commit themselves to raising more awareness and promoting scientific research.
Extra attention for people with scleroderma during COVID-19 pandemic
on World Scleroderma Day
June is scleroderma awareness month. This month is all about scleroderma (systemic sclerosis), with a climax on June 29th: World Scleroderma. Worldwide, 28 (patient) organizations in 22 countries, under the guidance of the FESCA (Federation of European Scleroderma Associations), campaign for more awareness for this potentially life-threatening condition.
Extra vulnerable due to scleroderma
Because of the COVID-19 pandemic that is causing damage worldwide, this year's campaign is all about protecting people with scleroderma. Scleroderma is a rare, chronic rheumatic disorder, in which the body's connective tissue hardens. The skin and internal organs can be affected. The consequences can be life-threatening and there is no cure yet. However, there are treatments to limit the damage to the organs.
People with scleroderma are extra vulnerable due to the use of immunosuppressive medication or already present lung problems as a result of the condition. This increases the risk of serious complications if they become infected with the virus. The message of the campaign for this year is therefore as follows: "Our smile is vulnerable. Protect yourself, to protect us."
Special role for Scleroderma Framed
Of course, Scleroderma Framed, who works all year round for people with scleroderma, also participates in the campaign. Indeed, there is an important role for Scleroderma Framed in the campaign, as in the campaign’s main image, six portraits of Scleroderma Framed, made by photographer Hans-Peter van Velthoven, were used.
About the Scleroderma Framed Foundation
Founder of the Scleroderma Framed Foundation, Jessica Thonen-Velthuizen, who herself suffers from scleroderma, works with a group of volunteers on their goal to get more publicity for scleroderma. In 2007 she conceived the idea to draw more attention to this rare condition in an artistic way. Since 2008, more than 100 models have been photographed by photographer Hans-Peter Velthoven. The photographs are used to put scleroderma on the map in travelling exhibitions worldwide.
More information
More information about the campaign, scleroderma or Scleroderma Framed can be found on:
www.sclerodermaframed.com and fesca-scleroderma.eu
Over the past ten years, the Scleroderma Framed foundation has collected portrait photos of more than hundred models with scleroderma, and these photographs were published in our “Scleroderma in beeld, 100+1 models” (“Scleroderma in Pictures, 100+1 models”) photo book. In portraying people with scleroderma, the Scleroderma Framed foundation tries to raise awareness of this condition in a positive way. This is much-needed, because scleroderma is a rare and potentially life-threatening rheumatic autoimmune disease, and even doctors and paramedics are rather ignorant of it. In June and October, we will further promote our goal of raising awareness of scleroderma among the public. The month of June is Scleroderma Awareness Month, and June, 29th is World Scleroderma Day, in addition to World Arthritis Day on the 12th of October. On the 15th of June, you can find us at the Smile for Scleroderma Framed Beer Festival in the Dutch town of Terheijden, a festival which is organised by people who are sympathetic to our cause. And last but not least, you can find us at the Scleroderma Conference in the Dutch town of Nieuwegein on the 29th of June, a conference hosted by the NVLE (the Dutch Organisation for People with Lupus (SLE), APS, Scleroderma and MCTD).
Stay tuned to our social media channels to receive the latest updates on all our activities and the exhibition.
In case you don’t follow us yet, you can find us at (link)
You can find all the information about the exhibition here.
The Scleroderma Framed Foundation has been invited to the World Scleroderma Congress, which will be held in Prague, on July 12-14, 2020, to present its travelling exhibition “Scleroderma in Pictures”. In a prominent space inside the Prague Congress Centre, a cross-section will be shown of the beautiful portrait pictures that were made in the past few years and that have been collected in two books of photographs. Together with some of the models and a number of volunteers, photographer Hans Peter van Velthoven and initiator Jessica will be travelling to Prague to go and engage with the congress audience.
Since 2008, the Scleroderma Framed Foundation has portrayed more than one hundred models with scleroderma for its travelling exhibition. These portraits were collected in two photo books. By portraying people with (systemic) scleroderma, the Scleroderma Framed Foundation is dedicated to drawing attention to the disease in a positive and artistic way. This is much needed, because scleroderma is a rare and potentially life threatening rheumatoid (autoimmune) disease, which is still not fully understood.
For more information about the Congress and FESCA, please click on this link.
We are happy and thankful for our participation and all the positive reactions from the visitors on october 12th, World Arthritis Day. We have been able to tell many people about Scleroderma Framed and how we strive for more scleroderma awareness with our traveling photo exhibition.
Click here to watch an nice impression of this beautiful day.
The Scleroderma Framed foundation has published two books of photographs.
The first book is called “Sclerodermie in beeld” (“Scleroderma in Pictures”) with portrait photos and quotes of models with scleroderma.
The second book is the anniversary book “Scleroderma Framed, 100+1 modellen”, with portrait photos of all the models who worked with us, plus a collection of scleroderma quotes.
When placing your order, you can indicate whether you would like to receive a copy of the first or the second book.
COLLECTIVE
On June 29, the death anniversary of Paul Kle, an artist who died from the effects of scleroderma, World Scleroderma Day is held annually. Across the globe, attention is given to scleroderma (also called systemic sclerosis) in June and especially on this day. During this month, Scleroderma Framed is also committed to raise awareness for this rare and potentially life-threatening disease that is often unknown among the general public.
This year, the Scleroderma Framed Foundation has played a special role in the campaign of the FESCA (Federation of European Scleroderma Associations) for which the message is: "Our smile is vulnerable. Protect yourself, to protect us". The campaign’s main pamphlets uses six portraits of Scleroderma Framed, made by photographer Hans-Peter van Velthoven. In the campaign image shared with hashtag #sclerosmile, you can see the six Scleroderma Framed models with their 'vulnerable' smiles.
‘It makes me proud that our way of working, for which positivity, art and the person behind scleroderma are key components, is recognized internationally. It really moves me'. Jessica - Founder of Scleroderma Framed
Extra vulnerable due to scleroderma
Scleroderma is a rare, chronic rheumatic disorder, in which the body's connective tissue hardens. The skin and internal organs can be affected. The consequences can be life-threatening and there is no cure yet. However, there are treatments to limit organ damage. People with scleroderma are extra vulnerable due to the use of immunosuppressive medication or already present lung problems as a result of the condition. This increases the risk of serious complications if they become infected with the virus. As a result of the COVID-19 pandemic causing damage worldwide, this year's campaign is all about protecting people with scleroderma.
About the Scleroderma Framed Foundation
Founder of the Scleroderma Framed Foundation, Jessica Thonen-Velthuizen, who herself suffers from scleroderma, works with a group of volunteers on their goal to get more publicity for scleroderma. In 2007 she conceived the idea to draw more attention to this rare condition in an artistic way. Since 2008, more than 100 models have been photographed by photographer Hans-Peter Velthoven. The photographs are used to put scleroderma on the map in travelling exhibitions worldwide.
More information
More information about the campaign, scleroderma or Scleroderma Framed can be found on:
www.sclerodermaframed.com and fesca-scleroderma.eu
Monique, on of our Scleroderma Framed models, tells her story:
“In 2010, I started to experience serious lung symptoms and was diagnosed with pulmonary
fibrosis. Organ transplantation was immediately discussed with me as one of the treatment
options. My lung fibrosis was found to be caused by systemic sclerosis, and other treatment
options had to be considered as well. Finally, the pulmonologist, together with a whole team of
bright minds, decided in January 2018 that I had to get screened for the transplantation, as it
could be too late for me otherwise. Eventually, it took until December 2018 until I was placed on
the waiting list. I was not ready for it mentally in January. My main challenge was to stay as
strong as possible both physically and mentally.
And currently... fear is all around us! I try to let it go as much as possible and after a while I was
able to manage to filter out what is important to me. Being outside, exercising, eating healthy
foods, connecting with friends online and a very small social circle around me offline. That said,
not having physical therapy for months to control the tension and pain of my scleroderma does
take its toll.
If I would get COVID-19 myself, it means I will be taken off the waiting list temporarily. There
have been far fewer organ transplantations in March and April, which means that the waiting list
is growing. In addition, it remains to be elucidated whether the lungs of many people who have
had mild or severe COVID-19 symptoms are still suitable for transplantation.
Right now, I am able to live my life with confidence and take responsibility for my health, trying
not to be overwhelmed by fear and focussing on what is and is possible. This positive mindset is
essential to me because it means a better quality of life.
During COVID-19 pandemic, it was suggested to me that I could participate in a (political)
campaign in which the new Donor Act is one of the central messages. I said yes to this because
I like to use my voice and face whenever it helps to create awareness. In my case, an important
point is that, if I am not using my oxygen, nobody will actually notice that I am sick.
Immediately afterwards, I was approached by the program “the 100: waiting for a donor” by one
of the Dutch tv channels. I was able to contribute to the trailer of the program and to a number
of testimonials. The program provides a glimpse into the lives of people waiting to get an organ
transplantation. It covers their daily smaller and larger struggles. An honest, high-quality
program.
My participation in the first broadcast of “The 100” has already generated a lot of awareness. I
have had many conversations about it, and luckily I was able to answer many questions people
had. Importantly, I also found out that many people only really start feeling the need for donors
when they know someone in their social network who is waiting on an organ themselves. This
shocked me, and for this and other reasons I would like to continue to devote myself to raising
more awareness.
There is still not nearly enough awareness about being an organ donor (or not). In my opinion,
you can only make a conscious choice if you know enough about what is important to you as a
person. Information is therefore essential, as well as talking about it. Then, the most important
step is to share what your decision is with your loved ones!
It was 2008, when we first met.
I had just emerged from the rollercoaster of pregnancy and stem cell transplant and had landed with both feet on the ground. Until that moment I had buried my head in the sand, functioning in survival mode and was preparing to leave the most beautiful job in the world.
It was time for me to share my experiences, fueled by encountering the impact of the unfamiliarity of scleroderma. I had to explain it so many times to family, friends, colleagues, as well as healthcare professionals in the hospital and beyond.
In addition, I wanted to give scleroderma a face, using photography as a tool, which suits me so well.
But first I wanted to meet people, people who were affected by the same fate.
And there you were, small in stature, but with a power that no big guy could match.
You gave me your fragile hand that felt like a firm handshake.
The beginning of 4 very special years, my first four years of activities for the NVLE (Dutch organization for people with scleroderma and other autoimmune rheumatic diseases).
We formed the new scleroderma/MCTD committee, together with Marieke, Laura and not much later Linda and occasionally we reinforced our team with new fresh power.
You were one of the founders of World Scleroderma Day, and the Sunflower symbol. You traveled the world, with your husband at your side and Winto, your service dog.
You were the first to represent the Netherlands in FESCA where you did what you were so good at: make a case for scleroderma.
You could spread your message like no other, by your perseverance, your drive, by being who you were.
We laughed, talked, discussed, but above all we had a great time together.
I took a sidestep and you and the rest of the NVLE committee were the first to be photographed for Scleroderma Framed (tag).
I didn't see it, didn't want to see that life was getting a little more fragile, that you had to take steps back.
Suddenly there was that phone call that you were in the hospital. Shocked, disbelief, having to pull my head out of the sand again. This is the reality, this is scleroderma.
You’ve left earthly life ten years ago.
Wendy, on this World Scleroderma Day we honor you for who you were, what you did, what you still do with us.
You are truly missed.
Mobirise
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