Word from the president 2

A global vision please: because CF is not only pulmonary and gastric

Chronic fatigue, muscle pain, bone pain, frequent headaches, anxiety, depression, etc. All these ailments related and interrelated to cystic fibrosis that are not or too little taken care of by our treatment teams. However, the consequences are numerous: decreased mood, lack of energy to carry out our daily tasks, generalized discomfort, and so on... Our FEV1 may still be high enough to hold a job, but work performance cannot be measured with spirometry; lung capacity alone does not determine a health condition from a global point of view.

Why, in 2021, is it still so difficult to get these symptoms recognized as disabling when it comes time to ask (or rather beg) our doctors to sign a work stoppage? No, it's not laziness. No, it's not a lack of will on our part. These invisible symptoms, which are difficult to measure and quantify, are part of our daily lives and add to our burden.

Why, in 2021, is it still so difficult to have shorter working hours or part-time work, without living in poverty? We want to contribute to society and achieve ourselves professionally, but at the height of our abilities and while respecting the limits of our condition.

Why is it always when our energy levels are at their lowest that we have to fight against all odds to get our heads out of the water? For example, by asking our doctors to stop work; by filling out paperwork to access health insurance, unemployment or social assistance; by running after food banks; by managing many hours of daily home treatments and several follow-up appointments.

It is true that multidisciplinary teams have improved over the decades, but do they cover our aging needs? When a transplant recipient is diagnosed with depression in the middle of menopause, which professionals should we consult to ensure appropriate medication dosages in our situation? What to do when they all throw the ball back? Let's face it, adults living with cystic fibrosis have a lot on their shoulders and it's hard to trust a health system that has focused primarily on the lungs and the digestive system.

With these questions in mind, Living with Cystic Fibrosis set up the think tank. Global care last April. The purpose of this committee? Better know and understand the reality of people living with CF, think about a more comprehensive way of caring for and treating them, and then make recommendations to decision-making bodies. You will certainly see publications in this direction over the next year; thank you in advance for the time you will take to answer our questions... because in the end, it is for ALL OF US that we work!

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