Asthma & Emphysema: "Like everything in life, it’s not easy to come to terms with your own limits!"

Giovanni is one of our Patient Experts, a group of patient advocates who are dedicated to spreading awareness, empowering their fellow patients and championing their needs with empathy and dedication.

Hello, and thank you so much for agreeing to share your experience with Carenity.

Firstly, could you tell us more about yourself (who you are, your family life, what you enjoy doing...)?

My name is Giovanni, 37 years of age, former flutist who currently work for an orchestra in the tour planning department. Music has always been part of my life since the beginning. In 1987, when I was born (prematurely), I stayed in an incubator for three months. To make my stay a bit less painful, my father installed a cassette recorder in the incubator to allow me to listen to classical music. From that day, classical music, has always accompanied me and been part of my life. Besides music, in my free time I love swimming and cycling, sports which both help me keep fit and my breathing.

Could you share some information about your medical condition? At what age were you diagnosed? What is your current management plan (doctors, treatments, non-medical interventions...)?

I was born prematurely, and I was lucky enough to be christened twice (because doctors didn’t think I’d make it out of the hospital). I had a cardiac arrest and a collapsed lung when I was born, so not the best start. I went in and out of hospitals up to three years old with bouts of pneumonias, together with difficulty in breathing. When I was 21 years old, I was diagnosed with asthma and lung emphysema, which forced me to have a change of career. In fact, I was studying to become a professional flute player, but practicing five to six hours per day wouldn’t have helped my lungs, so I had to stop playing.

At the moment, my asthma is under control: I take an inhaler once a day and I have a checkup every six months and a yearly spirometry to have my pulmonary functions checked. Additionally, I have a chest scan every four years to monitor my lungs.

You were born prematurely. According to you and your doctors, is there a connection between this and your medical condition?

Of course! Doctors told my parents that I could have been more likely to develop lung problems due to my premature birth. Doctors made my parents aware of it, although they couldn’t foresee how the illness would develop. 

What has been your journey with the illness from the time of diagnosis until today?

At the beginning, the journey was extremely difficult, as the diagnosis at 21 completely turned my life and career plans upside down. As mentioned earlier, I was studying at the Conservatoire to become a professional flute player, but I had to give up due to Emphysema and Asthma diagnosis. However, with the support and help of my family, in 2013 I gained a Master in Music Management and retrained to become an arts professional working in the orchestra management.

Currently, despite the odd colds during winter, I am in good health and I have developed a good relationship with my illness. It wasn’t easy to live with it. Like everything in life, it’s not easy to come to terms with your own limits!

You are a "Patient Expert." How did you attain this status? Why did you decide to become a Patient Expert?

A few years ago, I filled in an online survey to share my experience living with Asthma and COPD and, almost by chance, I was invited to attend a conference in Parma, Italy to share my story. Things led to another and soon after that project I was invited to participate in another research-based project working on a “Patient Research in Prematurity and respiratory diseases”. I have decided to become a patient expert to create awareness of the illness and try to help shape a better future for patients with respiratory illnesses.

In what ways do you embody the role of a Patient Expert? How does this status enable you to assist patients with the same medical condition as yours?

In a society where illness is always seen in negative connotation, sharing my experience and medical history with companies that are working to improve patients’ lives makes me extremely proud and grateful to be able to give back to the society. This is in my opinion the role of a Patient Expert: to use your knowledge, history, and - why not - your trauma and difficult medical history to make sure that future patients can have a better care and tailored help.

What advice could you give to patients who also aspire to become Patient Experts?

It took me a lot of time to even allow myself to talk about my illness and how I coped – and I am still coping with it. At times, I was embarrassed, too shy or too scared to open up and talk about it. However, becoming a Patient Expert has helped me not only to conquer my fears, but also to share them with other patients and the wider audience to create awareness about respiratory diseases. My advice to patient experts-to-be is to be curious, don’t be shy and share your experience and story with other people, so that it can help you and other patients.

Any final thoughts?

I would like to thank Chiesi and Carenity to give me a voice. It’s an invaluable opportunity to share my story with a large pool of audience members to create awareness about respiratory diseases. Thank you.

Did you also have a premature birth and suffer from asthma and/or COPD? We're conducting a survey with Chiesi to explore awareness of preterm status and its link to respiratory conditions. Your voice matters a lot, so please participate here:

Patient journey of preterm born people with respiratory dysfunctions

A big thank you to Giovanni for this interview!

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