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The unusual choir whose members can not sing together because they could die



Singing is not a risky practice, but if the members of this chorus did it together it could be lethal.

What the 12 Britons that comprise it have in common is a chronic and hereditary genetic disease called cystic fibrosis.

The gene it causes controls the movement of water in and out and out of body cells.

Patients who have this disease accumulate in the lungs and also in the area of ​​the pancreas, liver and intestine, a thick and sticky mucus that leaves the organs very vulnerable to infection.

The accumulation of mucus causes chronic infections that permanently reduce their lung function, to the point of death.

" Deterioration is inevitable, leads to weakness and eventually death ", according to The World Health Organization (WHO), although the severity of the condition depends on how affected the lungs are.

One of the aspects that most call attention to this disease is the risk of cross infections among the patients themselves.

The challenge of a choir

The lungs of patients with cystic fibrosis harbor specific infections that although usually harmless to healthy people, can be very serious for other patients with the same condition.

Some bacteria, such as Burkholderia cepacia complex and Pseudomonas aeruginosa can be contacted between persons by direct contact but also when sharing a room, room, medical equipment, cutlery or kitchen utensils .

Therefore, doctors advise patients to avoid physical contact with other people with the same problem by all means.

Singing the song One Voice ("Una Voz") was a challenge for the 12 patients.

That song is part of a charitable album, Choirs with purpose (Choirs with Purpose), produced with collective funding to raise funds for different British non-profit organizations.

"We can not be in the same room at the same time, if we did, there could be very serious consequences and we would be very sick", explained the BBC Bianca Nicolas, the driving force behind the "virtual" chorus of patients with fibrosis. cystic

Half of people with cystic fibrosis do not live more than 28 years according to WHO. Despite their numerous health problems, patients can usually go to school or work until shortly before they die, the organization says on its website.

"I came up with the idea of ​​the choir thinking about what we have in common despite not being able to be in the same room, these are the only people who can really understand what you're going through and it's hard not to to be able to meet, "he told the BBC.

But coordinating the recording was a" logistical nightmare, "he admitted.

All disinfected and two hours apart

Each member of the choir had to record his voice separately in a studio in London.

 99259305ficrosis-57c712693e150f32439c96c72e9a273a.jpg Although he likes music it is not easy to sing for Charles Muchael Duke, 22 years old. He has cystic fibrosis and is waiting for a double lung transplant. / BBC

After the producers had to thoroughly clean absolutely all surfaces that could have been in contact with the patient, vacuum the entire cubicle, walls included, and leave an interval of at least two hours between the departure of a patient and the arrival of another to guarantee his safety.

Charles Muchael Duke, 22, is one of the 12 members of the choir, who traveled from different corners of the United Kingdom to record the song.

One of his hobbies, while expects a double lung transplant is singing and composing songs with his guitar.

For him, not being able to meet in person with other patients with cystic fibrosis is a limitation that "isolates you"

"It's weird to think that this is the closest I'll be to any of these people," he told the BBC excitedly as he watched a video of the other choir members singing in the same cubicle where he had been.

Joining their voices despite physical limitations was an achievement for these patients.

"I think that despite everything we have managed to do what a choir does: bring people together to create a beautiful sound together".

For now there are no plans to record more songs.


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