The Coronavirus emergency seen from a Duchenne young adult
The global Coronavirus emergency is focusing the attention of civil society on many aspects of daily life, from healthcare to the power of the community. There is a common sense of fear, precariousness, attention and also an emerging need to be much more close to each other, while remaining distant. But how are adults with Duchenne managing emotions and actions at this moment? We asked Simone, Italian, 23-year-old, student of communication affected by Duchenne muscular dystrophy, to share his thoughts with the international community. We asked Simone to let us breathe his story.
“Stories and communication are important, says Simone. For this reason, I decided to undertake the course of studies in communication, because I dream of becoming a journalist and I think that each of us must be the bearer of a message as if we were a grounded Hermes, going beyond the obstacles that life places before us. Obstacles that, for example, Duchenne brought into my family’s life since the diagnosis: geographical and social limits, physical and social barriers. But on the other hand, Duchenne has facilitated the forging of the armour that I wear, that we wear every day.”
Having a pathology such as Duchenne muscular dystrophy means facing obstacles every day and making careful choices in consideration of the respiratory problems connected with it. Duchenne muscular dystrophy affects most muscles, including those important for breathing. Many people with Duchenne develop diaphragm weakness, have difficulty taking deep breaths and may also have trouble coughing.
“The respiratory problems related to Duchenne -continues Simone- require the support of devices such as the pulmonary ventilator, the Ambu-balloon and the coughing machine, which play a very important role in our lives as they allow us to deal with colds that can be very deleterious and rather aggressive. If a cold can be annoying and dangerous for a young adult with Duchenne and for those who assist him, it is easy to imagine how the Coronavirus could be a problem, now more than ever, in respect to persons at risk. But this risk can be avoided by respecting rules: respecting the rules and respect for others is fundamental.”
At this complicated moment, it is essential to follow all the safety instructions and to value every single action taken, because everyone’s personal reaction has an influence on the community. Now more than ever.
“Personally, in order to protect our physical and mental safety (in these days strongly tested) I have implored my loved ones not to leave their homes and to take all the necessary precautions, because I would never forgive myself if anything happened to them. I believe this is the perspective we all need to conform to, so that we can return as soon as possible to having a coffee with friends and, as Pope Francis said, to embracing one another more than ever before.”