Model in the spotlight - Wendy
Posted on Wednesday 29 June 2022 Reading time: 2.5 minute
It was 2008 when we first met. I'd just come off the rollercoaster of a pregnancy and a stem cell transplant and was trying to get back on my feet again. Up until then, I'd been burying my head in the sand, just trying to survive, and had said goodbye to the best job in the world.
It was time for me to share my experiences, spurred on by the lack of awareness surrounding scleroderma I had felt. Having to explain it so often to family, friends and colleagues, but also to healthcare professionals inside and outside of hospitals. 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 who suffered the same fate.
And there you were, small in stature, but with some power that no big guy could match. You gave me your frail hand, which felt like a firm handshake. It marked the start of four extraordinary years – my first four years working for the NVLE (a Dutch organisation for people with scleroderma and other autoimmune rheumatic diseases). We formed the new scleroderma/MCTD committee, together with Marieke, Laura and, not long afterwards, Linda, and every now and then new energetic members joined us to strenghten our team. You were one of the founders of World Scleroderma Day, with its sunflower. You went on a journey, travelling the world, with your husband and Winto, your assistance dog, by your side.
You were the first person to represent the Netherlands in FESCA, where you did what you did best: championing the cause of scleroderma. You were able to get your message across like no one else, through your tenacity, your drive, and simply by being yourself. How we laughed, talked and debated, but above all, what a wonderful time we had together. I took a side step, and you and the rest of the committee were the first to be captured on camera for Scleroderma Framed.
I didn't see, didn't want to see, that your life was becoming more and more fragile, that you had to take a few steps back. Then suddenly, there was this phone call telling that you were in hospital. Shock, disbelief, time to face reality again. This is reality, this is scleroderma. You left this earthly life ten years ago. Wendy, on this World Scleroderma Day, we honour you for who you were, what you did, and what you still do for us.
You are truly missed.
It was time for me to share my experiences, spurred on by the lack of awareness surrounding scleroderma I had felt. Having to explain it so often to family, friends and colleagues, but also to healthcare professionals inside and outside of hospitals. 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 who suffered the same fate.
And there you were, small in stature, but with some power that no big guy could match. You gave me your frail hand, which felt like a firm handshake. It marked the start of four extraordinary years – my first four years working for the NVLE (a Dutch organisation for people with scleroderma and other autoimmune rheumatic diseases). We formed the new scleroderma/MCTD committee, together with Marieke, Laura and, not long afterwards, Linda, and every now and then new energetic members joined us to strenghten our team. You were one of the founders of World Scleroderma Day, with its sunflower. You went on a journey, travelling the world, with your husband and Winto, your assistance dog, by your side.
You were the first person to represent the Netherlands in FESCA, where you did what you did best: championing the cause of scleroderma. You were able to get your message across like no one else, through your tenacity, your drive, and simply by being yourself. How we laughed, talked and debated, but above all, what a wonderful time we had together. I took a side step, and you and the rest of the committee were the first to be captured on camera for Scleroderma Framed.
I didn't see, didn't want to see, that your life was becoming more and more fragile, that you had to take a few steps back. Then suddenly, there was this phone call telling that you were in hospital. Shock, disbelief, time to face reality again. This is reality, this is scleroderma. You left this earthly life ten years ago. Wendy, on this World Scleroderma Day, we honour you for who you were, what you did, and what you still do for us.
You are truly missed.
