Model in the spotlight - Mireille
Posted on Sunday 11 January 2026 Reading time: 2 minutes
My name is Mireille, I am 54 years old and I live in Belgium.
After a year full of pain, medical tests, and several surgeries, I finally received a diagnosis in March 2024: diffuse systemic sclerosis, a rare disease that affects the connective tissue.
At first, it felt like a relief. Finally, the beast had a name. But because the disease is so little known— even among many doctors — it only truly sank in later what this really meant.
My body began to deteriorate more quickly, and I lost much of the strength and mobility in my hands. Working in healthcare, where my heart truly lay, was no longer possible.
Mentally, it hasn't always been easy either. A lack of understanding from others can sometimes hit harder than the disease itself. But I've learned to distance myself from the negative and to embrace the beautiful things: true friendships, small moments of happiness, moments of peace.
Systemic sclerosis is now my eternal travel companion — an unpredictable, fickle companion that forces me to listen to my body and slow down when needed. Still, I try to enjoy every day. Because I truly believe: "A Day without laughter is a day not lived."
When I was given the opportunity to take part in the Scleroderma Framed project, I didn't hesitate for a second. I wanted to help make this disease more visible, not only for doctors but also for the general public.
The day of the photoshoot was special. There were no boundaries between professors, patients, or team members. We were all just people. The connection with fellow patients was heartwarming.
Although we all have different symptoms, we face the same challenges: a lack of recognition, understanding, and treatment. But that doesn't mean we are looking for pity — above all, we want awareness.
That day gave me strength. I felt stronger, more confident and maybe even a little prouder. I used to never wear makeup. Now I wear it every day — not to hide, but to celebrate who I am, together with my travel companion.
After a year full of pain, medical tests, and several surgeries, I finally received a diagnosis in March 2024: diffuse systemic sclerosis, a rare disease that affects the connective tissue.
At first, it felt like a relief. Finally, the beast had a name. But because the disease is so little known— even among many doctors — it only truly sank in later what this really meant.
My body began to deteriorate more quickly, and I lost much of the strength and mobility in my hands. Working in healthcare, where my heart truly lay, was no longer possible.
Mentally, it hasn't always been easy either. A lack of understanding from others can sometimes hit harder than the disease itself. But I've learned to distance myself from the negative and to embrace the beautiful things: true friendships, small moments of happiness, moments of peace.
Systemic sclerosis is now my eternal travel companion — an unpredictable, fickle companion that forces me to listen to my body and slow down when needed. Still, I try to enjoy every day. Because I truly believe: "A Day without laughter is a day not lived."
When I was given the opportunity to take part in the Scleroderma Framed project, I didn't hesitate for a second. I wanted to help make this disease more visible, not only for doctors but also for the general public.
The day of the photoshoot was special. There were no boundaries between professors, patients, or team members. We were all just people. The connection with fellow patients was heartwarming.
Although we all have different symptoms, we face the same challenges: a lack of recognition, understanding, and treatment. But that doesn't mean we are looking for pity — above all, we want awareness.
That day gave me strength. I felt stronger, more confident and maybe even a little prouder. I used to never wear makeup. Now I wear it every day — not to hide, but to celebrate who I am, together with my travel companion.
