Qalmost forgotten. Just like patients suffering from this chronic respiratory disease. We are, we have been for a long time. Sick, afflicted by these almost friends: the bronchiectasis. Try pronouncing aloud this handful of consonants thrown there like this, five syllables, one after the other: bron-chie-c-ta-sie.
A somewhat angular name with a guttural sound, which in the initial part recalls the roar of a motor, as children do when they play with toy cars. In the central part a dry sound, stumbling in a sudden braking where the tongue stumbles and bangs against the teeth. And finally a smoother slide, to finish. This word is not easy to pronounce correctly on the first try, nor pleasant.
“Bronchiectasis” or “bronchiectasis” yes, but “bronchiestasis” or “bronchoectasias” no. Bronchiectasis is also frequently used and, internationally, “bronchiectasis”. In any case it is rare to meet someone who knows what we’re talking about, whatever way you pronounce it. Right or wrong the pronunciation of the name is not enough to recognize this pathological condition that no one seems to have ever heard, or almost never.
Bronchiectasis: a difficult name for an unknown disease
The data say that, in Italy, up to 500 adults out of 100,000 suffer from bronchiectasis, but it is one underestimated figure. The European community of scientists and industry experts confirms that bronchiectasis and its comorbidities continue to be common misdiagnosed And treated inappropriately. In Italy there are currently no specialized centers recognized by institutional bodies.
In Europe, management is not uniform and satisfactory, specific drugs are being studied but not yet available. There is a need to focus on new research to help small but active specialist communities continue the research and clinical networking that has led to improvements in disease knowledge and management in recent years.
Already from reading the radiological report, the word appears unknown, distant, almost mysterious. And it arouses extraneousness that arouses agitation that arouses the need for explanations which, until about ten years ago, most experts found it difficult to provide.
How does someone diagnosed with bronchiectasis feel?
Many patients have experienced the almost conviction of suffering from an obscure disease, bringing home the clear perception of being left on their own. Often considered sympathetic hypochondriacs or boring imaginary patients, we are a population of “almost forgotten” patients.
However cough, cough and more cough with never-ending phlegm prevents distraction from this condition. In fact, when we are happy and cheerful, with a good loud laugh our diaphragm causes vibrations to the point of unleashing that strange gurgle that needs to be defined, which makes it impossible to fully enjoy and requires us to cough, cough, cough… It is impossible to forget that you have bronchiectasis.
Patient associations, a fundamental help
Patient organizations have a key role and play the important role of offering help and support, disseminate information and act in defense of rights of patients and their families.
AIB-APS, Italian Bronchiettasis Association, active since 2019, it works with the aim of giving dignity to a little-known chronic disease often confused with other pathologies: non-CF bronchiectasis (non-Cystic Fibrosis). It wants to promote research, give support, facilitate doctor/patient communication, sensitize institutions, spread knowledge of the disease, guide treatment centres. www.bronchiettasie.org
LET’S BREATHE TOGETHER APS, active since 2014, deals with all chronic respiratory diseases, also responding to the needs of patients suffering from bronchiectasis often associated with other chronic and respiratory diseases. Create national strategies to transform post-pandemic respiratory care and reduce mortality in line with the United Nations Development Goals by 2030. www.breathetogether.org
Today 1 July 2023 we celebrate, together with the APS and the rest of the world, the second international day dedicated to bronchiectasis. The road is long but we are on the right track and, as we train in the increasingly fluent pronunciation of this glowing term, we hope it brings with it the ability to never be forgotten again.
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