NOVITÀTIF News (IT)

ROSARIO’S STORY | A True Champion of Resilience

He may be affected by β-thalassaemia major, but that has stopped him neither from maintaining a positive outlook on life nor from letting his resilience shine through the daily challenges of living with a complex and debilitating health condition.

37-year-old Rosario Maccarone from Calabria, Italy has indeed achieved something extraordinary. Last December, he became the protagonist of a real sporting feat, running a half marathon in the incredible time of 1 hour, 37 minutes, and 53 seconds, which is, in fact, the fastest ever documented in an official competition for a person with this pathology.

Rosario was more than eager to recount this wonderful experience to TIF for the International Thalassaemia Day 2022 and share some inspiring messages with his peers. “It is important to give credit for this result to the research, to the great efforts that have been made to improve the living conditions of individuals with thalassaemia, especially in the last few decades,’’ he says. In fact, until a few years ago, all of this would have been unthinkable! Something that I hope will give confidence to all younger patients, who at this moment may be seeing only the difficulties.’’

 

Tell us a little about yourself. Who are you and what do you do?

I am 37 years old, I am Calabrian and I currently work for the Italian Postal Services, although I have studied graphic arts. I love to travel, to seek out new experiences, and, for some years now, to run!

– How was this passion for running born?

Sports have always been a part of my life. In recent years, however, due to my previous job as a graphic designer, I spent too much time on my computer and I needed to be outdoors more and get some sun, given the rather disquieting test results of my latest MOC (aka Computed Bone Mineralometry, a simple, reliable and low radiation exposure exam, which analyzes the bone mineral density of the skeleton) because, as you know, one of the complications of thalassaemia is osteoporosis.

Therefore, I thought that instead of exercising in the gym, it might be a good idea to do some jogging to strengthen my bones. Without any pretense or agonistic ambition, of course.

– A half marathon is not a jog though. Did everything go according to your plans?

It is true, but the great goals are nothing more than a sequence of small steps, and if these small steps are guided by the desire to feel good instead of overdoing it, the path is less hard than one might think. Indeed, as far as I am concerned, it was very exciting!

Seeing, day after day, week after week, improvements that you never thought remotely possible, gives you a lot of confidence.

When you face difficulties, which until then seemed insurmountable, you kind of learn that tomorrow the impossible can actually become possible, and it’s worth fighting for, believing in it is equivalent to giving yourself a chance.

– How did running affect your health and vice versa?

After a year and a half of running, I repeated the MOC. The values were greatly improved. This was a huge success! There were also evident improvements in the heart.

Nevertheless, there are also some disadvantages. Running continuously and raising the pace, led to lowered haemoglobin levels; it was not easy to find a balance. In fact, I train every other day and not every day, and I have to limit particularly intense workouts.

At the moment, with these precautions, I am able to keep the pre-transfusion haemoglobin levels around 9.5, transfusing myself, however, a couple of days in advance.

For me this is a good balance, overall I feel much better.

– Your words convey a lot of passion! What do you feel when you run?

You see the asphalt rushing under your feet; the air caresses your face and opens up in front of you, making you enter as if into another dimension.

Your senses are incredibly amplified and this makes you feel even more alive. The relationship between yourself, the environment and time is totally transformed, emotions are overwhelming! 

– Tell us a little about the race, how did it go?

A day that I will carry in my heart forever, to begin with, it was fantastic to be among so many people who have the courage to get involved, who bring their efforts, their dreams, and their stories to that starting line. Each of them, unique.

Before the start I felt a bit of tension, it was the first time to ever participate in a competition of that type, I didn’t know if I would really be able to be competitive enough, and among other things, I didn’t even feel it was one of my best days.

When the starting gun was fired, however, all my anxiety melted away. After a few km, in fact, I was able to catch up with many of the athletes who had started before me. And then it was pure happiness … I had the volcano of Etna in the background covered with snow on one side and the sea on the other. An indescribable emotion, and then, at the finish line, the nice surprise at a chronometric level.

But a different time wouldn’t have changed much, because in the end for me the real success was being able to finish the race.

– So do you think it is possible for people with thalassaemia to practice sports at a competitive level?

No, I do not know this; I am not a doctor and I do not have the knowledge to be able to make assessments of this type.

Surely every sport makes its own story, as does every patient… some sports seem to me, if not prohibitive, at least strongly discouraged.

As for running specifically, I am not the first in the world to tackle similar distances in competitive races, much greater distances have also been run, even if at a slower pace. Having a competitive spirit does not mean arriving before others, for me it equals dedication, commitment, being among others, discussing, and having beautiful experiences that enrich us.

I think of friends who have wonderful families (and among other things, I bet running after 3 children every day is much more challenging than running the hardest of marathons …) or successful careers. Many people fight like lions doing exceptional things, despite their disease. Unfortunately, sports still remain a bit of a taboo for many.

– The secret of your result?

Doing things very gradually, without being obsessed with the result.

But, above all, taking care of yourself.

Trust the healthcare professionals who follow you and have the best possible compliance with therapies. I have to thank my parents who helped me a lot in this, they made me understand right away that my life depended on it.

They did a great job, like many other parents of people with this condition.

I also brought them to the race, along with other people I love, like my girlfriend who gives me courage every day. I also brought with me the faces of all the patients I met throughout all these years in the thalassaemia wards.

Because I think that the success of one must be the success of all.

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