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Systemic Scleroderma

Systemic Scleroderma patient Miranda ten Holder
Reading time: 3 min

Miranda used to work as a croupier at the casinos in Nijmegen and Amsterdam, until her hands began hurting hurt so much that she had to give up her job. At first she was diagnosed with hypermobility syndrome, but this diagnosis proved incorrect. She is now known to suffer from systemic scleroderma, a disorder in which connective tissues throughout the body lose their elasticity. The disease has also affected her lungs. Miranda was declared 80-100% unfit for work, but is very good at enjoying life.

They took a biopsy of my lung tissue. That was a tough procedure. It took me four months before I’d more or less recovered from it
 

It was not only the changes in her connective tissues but also her shortness of breath chest breathing that were initially misinterpreted. Miranda’s physical condition worsened. She stopped working as a croupier and moved on to become the Tablegames Manager at Holland Casino in the town of Enschede. That went well for eleven years, but then her lungs started to trouble her more and more. “I had further examinations, and in 2013 they took a biopsy of my lung tissue,” she remembers. “That was a tough procedure. It took me four months before I’d more or less recovered from it.” It turned out that 50% of Miranda’s left lung already consisted of connective tissue. “After the operation to obtain the biopsy I developed an airways infection that just wouldn’t go away,” she recalls. “I stopped working, and since then my condition slightly started to improve.” In 2013, Miranda was referred to the St. Antonius Hospital in the town of Nieuwegein, The Netherlands, where the correct diagnosis was made. In 2015, she became a patient of Professor Marjolein Drent, who asked her what goal she would like to achieve. “I wanted to get rid of my oedema,” Miranda says. “I have to use prednisone for the rest of my life, and that causes oedema. I used to have a slim and healthy figure, but now my face became puffy, I developed a belly and my arms got fatter, which is no fun at all. Fortunately though, the prednisone did have the intended effect, and my situation is now stabilised.” 

Walking up nine flights of stairs to keep fit     

Miranda was also invited to join the Fitbit study. She was given a wristband which continuously recorded her activities, and an “ild care activities monitoring app” on her mobile collected the data and linked them up to present a coherent picture. This provided her with valuable new insights. “When you become ill, you no longer know what you can and can’t do,” she explains. “I discovered that although I quickly get out of breath, my heart rate remains nicely within the normal range. This helps me to distinguish danger signals from noise.” Since Miranda lived in an apartment on the ninth floor, her training goal was easily defined: walking up the stairs. “All other residents were using the lift and said I was crazy,” she laughs. “I used to have to take a rest after walking up two flights of stairs. But I noticed that the time it took me to regain my breath became shorter and shorter. And when I lay down on the couch exhausted, I felt very proud of myself.”

Chances of getting a lung transplant

Since Miranda’s lungs are in a poor condition, and are not likely to improve, she is eligible for a lung transplant in the longer term. “Currently I’m just trying to optimise the condition of the remaining intact lung tissue,” she explains. “A lung transplant would mean I would suddenly get completely healthy lungs and I would theoretically be able to do whatever I want to do. That sounds marvellous, but if your body doesn’t respond well and rejects the donor lung, you’ll be dead within days. My current quality of life is good, so why should I rush to take that gamble now?”

Practical approach and a positive attitude

Miranda has now moved to a two-story house in Enschede. Although she generally manages to cope on her own, she needs assistance with the bigger jobs. “I couldn’t lay vinyl flooring without help, but I can manage regular household chores.  Whenever something’s got dirty, I’ll clean it, in stages.” Nevertheless, Miranda prefers to live her life mostly on the ground floor, and also sleeps downstairs. “It means I’ve got everything within easy reach: the kitchen, my bed, my dog Pablo and the outside world.”  
Miranda has a positive attitude, just taking things as they come. “I do manage my 10,000 steps a day, which I owe partly to Pablo, as I take him out for walks for at least two or two and a half hours a day. I was actually told before that I couldn’t have a dog, as it could trigger flare-ups. But Pablo doesn’t moult, so I can have him.”
Whenever Miranda feels like lying on the beach to catch some sun, she does so. But she had to turn down an invitation from some former colleagues to join them in the Amsterdam Pride Canal Parade, on a boat through the city’s canals. “Before I’d make it to that boat, I’d already be exhausted. That’s impossible. You know, you could pity yourself all the time, but that doesn’t help. I’d rather try and find out what still lies within my range. Because if you start to think you can’t do anything anymore and give in to that idea, you’ll find yourself on a downhill road very soon. That’s why I keep up my spirits and enjoy the little things in life: the sunshine, the birds singing, and Pablo.”

If you start to think you can’t do anything anymore and give in to that idea, you’ll find yourself on a downhill road very soon

Miranda ten Holder is single and lives in Enschede with her three-year-old Chihuahua Pablo. Until 2013, she used to work at Holland Casino, first as a croupier, later as a manager. She has been declared 80–100% unfit for work because of her scleroderma. Her practical approach to, life is enabling her to live independently, and her positive attitude helps her enjoy the good things in life.

Interviewer:
Michelle Scherpenborg, copywriter/editor


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