The first platform for exchange and support dedicated to individuals affected by respiratory diseases and their caregivers, born from the urgent need to create a space where they can come together within a compassionate community.
This collective is committed to breaking the isolation imposed by illness.
It will offer everyone a place to share their experiences, ask questions, and express themselves without guilt, while feeling genuinely heard and understood.
For let us not forget, only a patient or a caregiver can truly comprehend what the other endures on a daily basis.
Respiratory Health:
A Public Health Emergency
Key Figures:
Third Leading Cause of Death
Respiratory diseases represent a major concern for global health, accounting for approximately one in six deaths in industrialized countries, with a rate comparable to that of the early 20th century.
Millions of Patients Across Industrialized Nations
Shortage of Pulmonologists and Medical Desertification
Often invisible, these diseases lead to significant disabilities. They impose a double burden: facing the daily struggle of the illness itself and coping with a disability that is frequently unseen and too often ignored.
While a significant portion of the territory in industrialized countries is affected by medical desertification, the limited availability of pulmonologists creates a profound inequality in access to specialized care.
A Detrimental Impact on the Quality of Life of Patients and Their Caregivers
The Patient's Situation
Patients face numerous obstacles: discouragement, poor adherence to treatments, and disruptions in their care pathways.
These challenges plunge them into deep distress, increasing the risk of relationship breakdowns. This risk is particularly high among women, who are six times more likely to experience a separation when facing a serious illness.
In light of this urgent reality, tackling isolation and improving mental health have become priorities for both the European Union and the World Health Organization.
Therefore, it is essential—and our duty—to combat the feelings of shame, guilt, and loneliness associated with illness, and to fight against medical exclusion in order to improve the patient’s quality of life.
The Daily Life of Caregivers
In industrialized countries, millions of people take on the role of caregiver, often without even recognizing it as such.
In the face of a loved one's illness, the caregiver endures a solitary battle. Their personal, professional, and social life is frequently fragile, fragmented. Physical and mental exhaustion becomes a recurring burden, far surpassing the illness itself. Overwhelmed by often crushing responsibilities, the caregiver is left isolated.
It is crucial to remember that the role of caregiver can be imposed at any age, without preparation, and it is essential to alleviate their burden.
As true collateral victims of illness, caregivers must be able to care for themselves in order to continue supporting those they look after effectively.
Caregiver AND Cared For
In some couples or family pairs, each person becomes both caregiver and care recipient.
This dual role, often hidden out of modesty, brings with it a doubled emotional and physical burden.
How can one support the other while struggling themselves?
This interdependence, lived out in intimacy and without external support, leads to deep isolation.
Suffering remains unspoken, respite is rare, and roles blur. Exhaustion looms, with increased risks of chronic stress, withdrawal, and even disruptions in care.
These shadowed duos, invisible in statistics, embody a little-known reality: that of an invisible double burden—one that urgently needs to be recognized and supported.
Minor and Caregiver
Among the millions of caregivers in industrialized countries, millions are minors, often invisible to society.
They must balance their studies with supporting a sick relative.
Taking on this role at such a young age carries significant risks: these young individuals bear complex responsibilities, with deep repercussions on their education, health, and social life.
Exposed to increased isolation, difficulties with concentration, and a risk of dropping out of school, their well-being is deeply affected.
The heavier the caregiving burden, the more overwhelming the emotional pressure becomes, leaving them with a challenging life journey, far removed from the concerns of young people their age.
A Collective Response Born of Necessity, in the Face of Unmet and Often Invisible Needs
"In the face of this undeniable reality, a personalized solution is imperative: essential support offering tailored resources for victims and their caregivers within a community."
"Beyond medical appointments, when the patient or the caregiver has no one left to confide in, when information can no longer replace human presence.
That is when the digital space gives way to the human voice."
"A living space, designed by and for people living with respiratory conditions and their caregivers, where voices come together to give rise to a collective voice, enrich public dialogue, and advance advocacy efforts."
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Association Josiane Salone
united against COPD
Nonprofit Organization under French Law 1901
Officially recognized Public Interest Organization
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It does not provide medical advice.
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