A Dubai-resident's battle with a rare chronic disease has made her a medical case study

‘Having a chronic condition doesn’t mean you are dead’ believes Monsarrat



Photo by Rahul Gajjar
Photo by Rahul Gajjar
by

Sushmita Bose

Published: Thu 28 Jul 2022, 7:39 PM

When you first see Coline Monsarrat, you’re likely to think she’s on a double dose of pep pills. Effervescent, limber, twinkle-eyed, bursting into gales of laughter at the drop of a hat. I meet her one morning in DIFC and have to wait for my cup of coffee to cheer me up, while she’s already full of beans.

Coline is French, 31, a chronic disease advocate, and, in March this year, she launched her own publishing house, Apicem. “It means mountain in Latin,” she laughs. In fact, her surname — Monsarrat — also means mountain in Spanish, which is why she zeroed in on Apicem as her ‘brand’. Life, after all, is all about climbing a mountain and reaching the summit.

It’s almost impossible to believe her litany of medical woes — especially since she talks of each one of them with a full smile. At first, she sets the baseline. “I have hereditary chronic pancreatitis (HCP), a very rare disease — we are about 10,000 in the world,” she beams. “Since the age of five, my pancreas have been inflamed: my genetics are coded in a way that every time I eat, the enzyme in my pancreas that are secreted to digest, are actually attacking.” Effectively, for the past 25 years, Coline has had a routine. “Once every two to three months, I suffered an episode. I couldn’t eat, couldn’t drink, used to be curled up in pain, then I recovered, and waited for it to recur a couple of months later.”

And because she grew up with the disease, she didn’t even know what it’s like to be normal, and “not be in pain”. “I remember, when I was a kid and the episodes hit, and I used to be keeling over in pain, the other kids would be playing… But I would never feel sad… instead, I would wait for the pain to go away and immediately jump into a ‘normal’ groove, start running, playing, forgetting everything.”

She went to university in the US. After studying in San Diego, California, Coline had moved back to Paris. Soon, she was offered a job with a French luxury perfume company, headquartered in Dubai, as brand manager (“retail has always been my thing”), who would also help with store architecture, design and animation (“I love being creative”).

Coline moved here in 2016, when she was 25. “I loved the multicultural side of Dubai, so many nationalities, so many languages… I loved the ease of life… it was so clean!... and, of course, the security — as a woman, even at 3am, I was safe, that doesn’t happen in most other cities!”

‘My body stopped feeling pain’

Five years ago, just a year after she moved here, Coline’s recurring HCP pain suddenly stopped. “Oh my God, I thought, maybe my condition has reversed,” she is again in full laughter flow. But it was revealed later that her HCP had, in fact, advanced — “so much that I could not feel pain anymore, I’d just become too used to it.”

There was a reason why she went for a check-up that brought on this reveal. A couple of years after she stopped feeling pain, she was suddenly feeling — uncharacteristically — tired. “In January 2020, I had 104-degree fever, that wasn’t going, so I went to the hospital.” A blood test revealed Coline had sepsis in her kidneys, and it was at the point of organ shock. “Basically, one of my kidneys was completely blocked by a stone that had fossilised, and I needed emergency surgery,” she throws up her hands in the air while her eyes twinkle, smile intact. “And I couldn’t feel the pain that stone was generating in my body, because, like I said, my body had stopped feeling pain.”

There was more news waiting for her. Her tests also revealed that she had Type 1 diabetes. “Today, in France, I am the youngest person to have HCP while being diabetic,” she says almost triumphantly.

The news flow didn’t stop at that. “I was also told I have stage-four rectal prolapse, and to fix that I needed another surgery. That didn’t work, so there had to be one more.”

At the end of the saga, the bad news was: “I wouldn’t be able to have kids.” But the good news was the creation of an experience: “My surgery was done by a robot, and it was very cool.” Overall, “I feel lucky — I met some great doctors at Mediclinic, and I now have my own set of them, who know my condition.”

By September last year, Coline had completed eight surgeries. “I had taken 16 days leave in all — and, at home, I had to manage everything by myself… I didn’t take a single vacation in two years.”

And yet, there was something not sticking on the job front. There was hardly any appreciation.

“That’s when I snapped. Did I really want to work for others? Why couldn’t I do my own thing?”

A new beginning

Coline decided to start her own business of children’s colouring books and “sarcastic adult books” (we’ll come to that in a moment) “where, one day, I would have a diverse team, and employ those who are differently-abled.” She quit her job in February, and launched Apicem in March, in the US. Amazon prints and ships her books, currently to the US and Europe, but she plans to expand the market to the Middle East and Asia shortly. The creatives and content are mostly done by her, and, at times, she hires illustrators and writers on a freelance basis. “Everything is done online — but, one day, I hope to have brick and mortar stores!”

Explain “sarcastic adult books”, I say. “You know, I touch upon themes like ADHD: some say it’s a weakness — but I don’t think it is if you work it to your advantage… and if you have a chronic condition, it doesn’t mean you are dead… all this I try to convey in a funny way.” Obviously, she laughs again. She also has her sights set on starting a quirky apparel sub-brand.

Coline’s epiphany

“The insides of your body do not match up with what you appear to be,” is what Coline keeps hearing from doctors. In fact, when she heard it the first time — when she was diagnosed with diabetes — it somehow stayed with her. So, she even enrolled for an online psychology programme (from Louisiana University) to understand her profligacy of optimism. “Apparently, 40 per cent of happiness is genetically designed,” she laughs.

Her spate of medical emergencies also made her realise “I could have died anytime — and I didn’t want to have regrets. I will not regret from now on — for the rest of my life. And nothing will stop me from succeeding.”

sushmita@khaleejtimes.com


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