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PARE0002 A Photo-Project about Young People Suffering from Juvenile Arthritis
  1. B. Ziegler
  1. Photographer/Freelancer, Dortmund, Germany

Abstract

Background “It is a vicious cycle. Early morning, you wake up. First thought: how much pain will I have today? Can I stand up? Can I move my joints? Can I go to school? Or can I go out later to play with my friends?”

These questions are normal for me, a twenty-five years old photojournalist; and all the other children in the world who suffer from juvenile idiopathic arthritis. Arthritis is a disease commonly considered by the general public to be an “old person's disease”. The reality is that many young people live with this disease. The chronic progressive inflammation – primarily of the joints – appears for reasons unknown. It is one of the most common chronic diseases beginning in childhood.

So what does it mean for a child to suffer from this painful chronic disease so early?

Objectives I am a photographer, or a “storyteller”, but I am also affected by this disease; making the subject matter deeply personal. My goal is to share the voices of other young rheumatics and show how other young people deal with their arthritis individually. Through the means of photography and personal observations it is possible to create deeper insights into children's perspectives.

Methods Driven by my personal ambitions of starting a professional career as a freelance photographer and living at the same time with a chronic disease, I started to follow young children and teenagers suffering from juvenile arthritis.

In 2014 the project began: for a couple of weeks I moved in with a family who had two arthritic children, in order to photograph their daily life. In 2015, I continued photographing more protagonist all over Germany. From there, the project became part of my final bachelor exam for my current University-level photographic studies. I spent weeks in hospitals in order to capture the realities that these young people are living within. I took part in support group events and weekends. In addition, I followed these subjects in their daily life and free time. My goal was to gain the closest possible relationship that I could with my protagonists.

Results By spending such a considerable amount of time with these young people, I was not just a silent observer, I was part of their life. This helped me develop a deep understanding of their point of view and enabled me to tell their stories. The resulting photo-essay brings together all the different aspects of lives of children with rheumatism.

Juvenile arthritis is a disease which is often not visible. The pain can feel so different on a daily basis and is highly individual. My photographic series tries to approach this fact in an atmospheric way.

Young rheumatics have their ups and downs. One day they may wake up with a lot of pain and be unable to move, if their joints have stiffened. The next day they may feel fine; able to go out and live their lives as regular people. This creates the so called vicious cycle. These young people are obligated to accept these circumstances as continuously present hurdles and factors in their life.

Conclusions The project is intended to be a sensitive example of how young people cope with such a disease. On one hand it is intended give courage to viewers who also have arthritis by showing them that they are not alone. On the other hand, the message is intended to introduce juvenile arthritis to a wider audience; the general public, whom are likely unaware of the realities of this disease.

Disclosure of Interest None declared

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