2024-10-10 06:00:00
No one is really prepared to become a caregiver, even less when it comes to supporting one of the three million people in France affected by rare diseases, 50% of whom are children under 5 years old. Every day, these millions of parents, brothers, sisters, children and loved ones find the strength to face a daily life that few can imagine without being confronted with it.
This daily life is marked by permanent uncertainties, even before the diagnosis of the disease: diagnostic wandering lasts on average five years, according to the latest national rare diseases plan (PNMR). An uncertainty that may never end, even beyond diagnosis, because there is often no treatment for these diseases.
Being a caregiver for rare diseases means having to find unsuspected resources to explain to a child an illness that you sometimes struggle to understand yourself. It’s living with a progressive illness, punctuated by unpredictable symptoms, requiring constant presence.
The role of the caregiver remains too discreet
Carers assume multiple responsibilities, often mundane and therefore invisible, but which are essential to the care process. They juggle multiple trips to the hospital, complex administrative procedures, and much more. Their daily commitment makes them real pillars for patients, of course, but also, for medical teams, essential watchdogs of the care pathway.
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Their presence is a lifeline, not only for the sick, but also for other family members and healthcare professionals. However, recognition and support for caregivers remain on the fringes of public policies aimed at rare diseases.
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The latest national rare disease plans have made it possible to advance research and improve patient care, making France a pioneering country in this field. However, the role of the caregiver still remains too discreet, despite an awareness… little followed by concrete actions.
For the creation of a helping employee status
It is therefore crucial to implement policies specific to caregivers of people with rare diseases, to improve not only the care of patients, but also their quality of life and that of their loved ones, and to position France as a as a leader in this field.
Even if solutions already exist, such as the creation, by many municipalities, of caregivers’ homes and reception and respite structures, much remains to be done, as shown by the reports of the first two editions of Regards Croissants sur les Illnesses. rare from Alexion and OrphanDev.
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