A "devastating disease". Thus Marie Laure Dasse, 52, active woman who spent her time "running everywhere" only 3 years ago, qualifies COPD or Chronic Obstructive Pulmonary Disease. Diagnosed late, this mother tells to have just suffocated one morning in January 2015. Transported to the emergency room, it is "filled with carbon dioxide" which suffocates. Very weakened by an influenza and a pneumococcus, it will take more than one month of intensive care, in an artificial coma, so that a pulmonologist finally poses the good diagnosis. "Before that I was treated five years for an ordinary asthma. I regret all the lost time that has allowed the disease to progress insidiously ".

Skewed, COPD is a chronic inflammatory disease that is characterized by progressive narrowing and obstruction - ultimately irremediable-, airways and lungs. Consequences: breathing difficulties cascading up to choking.

COPD: insidious symptoms, progressing disease

On the symptoms side, there is nothing alarming at first: a slight morning-wake cough in smokers or former smokers who represent 85% of COPD victims, air pollution being another of the main causes of the disease - shortness of breath (dyspnoea), sputum and recurrent tiredness. Evils that increase with time to hinder the person in his daily activities. Going out shopping, going to work, climbing three steps can become a real ordeal for the sick. In recent years, women are more and more affected. More likely to smoke, they are also physiologically more vulnerable to the harmful effects of tobacco .

In France, an estimated 3.5 million people are affected by the disease, accounting for almost 8% of the adult population ¹ . "The official figures speak of 17,500 ² deaths directly related to COPD. It is more deaths each year than road accidents, "says Eric Salone, founder of the association Josiane Salone to raise awareness of the disease and to put victims in contact.

From disability to isolation

Deceased at the end of 2017, her mother, Josiane Salone, had COPD. In 2012, this 64-year-old baby boomer complained of heart pain . Sent to a cardiologist by his GP, he is told tachycardia, "one of the many consequences or diseases associated with COPD," Eric Salone recounts.

Diagnosed with chronic obstructive pulmonary disease only three years after this first diagnosis, Josiane Salone experienced a difficult end of life. "It must be understood that this disease, beyond the disability it causes, ends up isolating you. Moreover, she is often associated with depression . The fact that she is not yet sufficiently known increases this feeling of incomprehension and loneliness of the patients. "

A poorly known disease

Under diagnosed by general practitioners who tend to associate its symptoms with chronic bronchitis or asthma, the disease, which is progressive in 4 stages, is often detected late in patients who have been in their forties. However, "a simple test of spirometry (breath) using a pocket spirometer would be enough to put the ear to the ear of professionals who could then send the patient to a respirologist," observes Jean-Philippe Santoni, volunteer respirologist for the Breath Foundation.

"In the case of COPD, bronchial obstruction on respiratory flow, especially during expiration, is so clear that it requires a consultation in pneumology. At this time, to confirm the diagnosis, we will carry out radios, or even a chest CT scan. The presence of emphysema more or less extended (note: air bubbles in the lungs due to the destruction of pulmonary alveoli) is almost always noted, "says the doctor. And to add "it is a disease that we do not know how to cure yet but the sooner it is taken, the more the life expectancy of the patients is increased".

Treatment to improve living conditions

For this, a therapeutic protocol designed to improve their comfort and slow the progression of the disease is set up.
For smokers, we will immediately stop smoking . On a daily basis, the doctor prescribes inhaled bronchodilators, up to three times a day. Depending on the case, a respiratory rehabilitation, in the form of "cure", from one to three months may be prescribed. It includes exercise and respiratory physiotherapy for total exercise re-training. In addition, there is usually psychological management and, in the case of associated metabolic diseases, a nutritional rebalancing.

"We're going to die asphyxiated and that's unbearable"

What transform from A to Z the existence of the concerned. "We live from day to day, we do not project anything," laments Marie-Laure Dasse, who spent her last Christmas in the hospital. "Since our lungs and our whole body are weakened, it is easier to contract any microbe, " she says. In these moments of crisis, called exacerbations, the daily care is not enough any more and the patients are put under oxygen. In stage IV says Gold, the most advanced of the disease, many are living in bed under a respirator.

"We would like someone to care about us! Today, we just feel as though we are dying to suffocate and that's unbearable, "said the mother of three who regrets not seeing anything coming from the research side. An ant work that can seem at a standstill as the ramifications of the disease, itself associated with a multitude of other pathologies (so-called comorbidities) makes it complex. "One of the most promising leads is genetic testing," says Dr. Santoni. The study of the disease with the help of the latter must allow, in the long term, to better identify its mechanisms in order to refine the treatments and perhaps even one day to be able to prevent it.

Shameful patients

Prevention is precisely the workhorse of Eric Salone. In contact with the health authorities, the Paris City Hall and the CPAM, he hopes soon to be able to organize a day of sensitization and screening in companies. Because talking about the disease is essential to better diagnose it but also to play down the feeling of shame it conveys. "It's well done, you just had to smoke! "Summarizes Eric Salone who remembers long discussions with his mother on the subject:" Before being his loss, smoking was mostly his freedom, his way to emancipate himself. "

Every November 15, on the occasion of the World Day Against Broncho-Chronic Obstructive Pulmonopathies, the associations are mobilized throughout France to organize free screenings. Sixth leading cause of death worldwide in 1990, COPD is projected to rise to third place in 2030 according to the WHO ^3.

¹ https://www.em-consult.com/rmr/article/269285

² https://www.has-sante.fr/portail/jcms/c_1518063/en/bronchopneumopathie-chronique-obstructive

³ https://www.who.int/respiratory/copd/en/

More information on www.association-j-salone.com/ and https://www.lesouffle.org/