“‘Wendy, (+ 2012), she was partly responsible
for putting World Scleroderma Day June 29,
the sunflower and the World Scleroderma
Congress on the map. We are thankful for
her enthusiastic and determined involvement’.”
“It was really right in your face,
a lot of fun and, in particular,
you could see the person in their
dignity, sorrow, beauty and pain.
In short: THE SOUL”.
“Is science interested in raising
awareness of rare diseases?”
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.
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.
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.
Order our wristbands and wear them to show that you are sympathetic to our cause.
You can choose between a red wristband with “I support www.sclerodermaframed.com” printed on it, or a white one with the text “Smile4sclerodermaFramed”.
Please indicate your favourite colour when ordering a wristband, otherwise we’ll pick a colour for you at random.
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
Stichting Scleroderma Framed bestaat dit jaar 10 jaar. Met het portretteren van mensen met (systemische) sclerodermie brengt de Stichting Scleroderma Framed deze aandoening op een positieve wijze onder de aandacht. Dit is nodig omdat sclerodermie een zeldzame en potentieel levensbedreigende reumatische aandoening is die zelfs bij medisch specialisten nog te onbekend is. Inmiddels zijn al meer dan 100 modellen met sclerodermie op de gevoelige plaat vastgelegd; des te meer reden voor feest en een nieuw fotoboek. Vrijdag 12 oktober a.s. wordt, tijdens WereldReumaDag, dit boek feestelijk gepresenteerd in Lux te Nijmegen.
Jessica’s missie
10 jaar geleden startte Jesscia Thonen-Velthuizen haar missie; sclerodermie ‘in the picture’ krijgen. Door onbekendheid over deze levensbedreigende aandoening worden symptomen niet herkend en wordt de diagnose vaak (te) laat gesteld. Jessica, die zelf ook sclerodermie heeft, kwam 10 jaar geleden tijdens haar stamceltransplantatie voor systemische sclerodermie, met het idee om haar aandoening op een positieve kunstzinnige wijze onder de aandacht te brengen. Jessica en de befaamde (pop)fotograaf Hans-Peter van Velthoven sloegen in 2008 de handen ineen en inmiddels heeft Hans-Peter al meer dan 100 mensen met sclerodermie op geheel eigen wijze op de gevoelige plaat vastgelegd. Hij portretteert de mens achter de aandoening, zonder de typische kenmerken van sclerodermie te benadrukken
Prof. Dr. Frank van den Hoogen (verbonden aan de Sint Maartenskliniek en het Radboudumc in Nijmegen) sloot zich in 2010 aan bij het initiatief van Jessica en Hans-Peter. Ook hij zag de positieve reacties van de modellen op de fotoshoot en de groeiende interesse van medisch specialisten. Mede op zijn initiatief heeft er een klein wetenschappelijk onderzoek plaatsgevonden naar de psychologische effecten van de fotoshoot op de modellen. Verreweg de meeste modellen gaven aan een positiever zelfbeeld te hebben na de shoot omdat de foto niet hun ziekte benadrukt maar omdat zij zelf letterlijk ‘in the picture’ staan.
Nationaal en internationaal succes
Langzaam maar zeker boekt Stichting Scleroderma Framed zowel nationaal als internationaal succes. De afgelopen 10 jaar heeft de stichting onder andere deelgenomen aan internationale congressen, geëxposeerd in een groot aantal Nederlandse en buitenlandse ziekenhuizen en geëxposeerd op het Ministerie van VWS en in de EU in Brussel. Diverse (inter)nationale media gaven aandacht aan het werk van de stichting.
In 2014 kwam de eerste bundeling van foto’s uit in het boek ‘sclerodermie in beeld’, en 12 oktober a.s. wordt het tweede boek ‘10 jaar sclerodermie in beeld - 100 + 1 portretten’ gepresenteerd. Stuk voor stuk krachtige mensen die al voor veel meer bekendheid over sclerodermie hebben gezorgd met hun prachtige ‘little big smile’.
'Scleroderma Framed brengt Sclerodermie in Beeld'
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Contactpersoon voor dit event is Jessica Thonen-Velthuizen
telefoon:
Stichting Scleroderma Framed
P/a Leuthsestraat 13
6575 JD Persingen ‘The Netherlands’
06 39 66 25 23
info@sclerodermaframed.com
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