Transcript
[00:19] Hi, everyone. My name is Marika. I live in Sardinia, an island off the coast of Italy, and I’ve been living with a diagnosis of pulmonary arterial hypertension for about fourteen years, maybe even longer.
[00:37] I was only twenty-four when I was diagnosed with pulmonary arterial hypertension, and I won’t deny that being diagnosed with a disease—in this case, a rare disease—turned my life upside down and threw me off balance. I felt confused, lost, and at times even alone.
[01:04] In those moments of confusion, the first instinct—for me, I think, but also for others—is to shut down, to be overwhelmed by fear and the feeling of having lost control of one’s body, of one’s life. It’s almost as if time stands still and we’re on standby.
[01:28] We start asking ourselves so many questions that we can’t answer: “Why me? Why at this age, just when I was building my life? What will I do now? Will I be able to work, do the job I wanted, or devote myself to my favorite hobbies?”
[01:56] And it was right in the midst of these countless uncertainties—which were causing me great anguish—that I decided to find my own answer instead. I didn’t want to remain stuck in a limbo of doubt. I didn’t want everything that had happened to me to make me feel angry at illness or at life, or to try to blame someone.
[02:23] It had turned my life upside down, that’s true. But I wanted all of this to turn into something beautiful. Of course, I hadn’t chosen that life, but I could certainly choose to create a new one, to adapt it and enrich it a little in my own way.
[02:42] For this reason, over time, I’ve come to realize that perhaps pulmonary arterial hypertension—and all my other illnesses, because this isn’t the only one I suffer from—didn’t come to ruin my life or to do me some great wrong, but rather to tell me: “It’s time to change. It’s time to do something beautiful and new,” despite the difficulties that obviously existed and still exist.
[03:18] Of course, I couldn’t change the diagnoses; I couldn’t eliminate the disease; I couldn’t eliminate the limitations. But I could choose what to do with them—how to transform them, for example, into a purpose, into a positive message for myself and for others as well.
[03:38] How? By supporting others, by helping, for example, to raise awareness and spread the word about this disease—since it’s still not very well known, both among the general public and in the medical field. And perhaps by giving hope to people with pulmonary arterial hypertension—including myself, of course.
[04:04] But when you do this with others, it obviously changes the way you approach life, especially if those involved aren’t familiar with pulmonary arterial hypertension. Building an awareness network with many people certainly helps you feel less alone in this battle.
[04:32] It’s precisely this desire to play an active role, to live with the disease, and to shine a light on a rare condition like pulmonary hypertension that led me—along with many others—to start the group “Give People with Pulmonary Arterial Hypertension a Breath of Fresh Air.”
[04:56] About three years ago, on a typical Sunday in March, during an edition of the “Solo Women Run,” I was accompanying my mother to the event. She, along with some of my other friends, suggested that we create our own group, dedicated specifically to pulmonary arterial hypertension, and that we participate.
[05:31] What is the Solo Women Run? It’s, I believe, the most important event held in Sardinia, and one that now also involves many women from all over Italy. It’s an event of solidarity, of sharing personal stories, and of raising awareness, held every year in Cagliari, around March, close to International Women’s Day. Now more than 16,000 women and children participate, along with, of course, many other supporters who are there to cheer them on, as well as numerous TV and radio outlets and influencers.
[06:11] In the past, I had participated in the event once or twice with friends or accompanied my mother. But I didn’t know I could take part with a new group, one dedicated specifically to a rare and little-known disease like pulmonary arterial hypertension.
[06:30] In fact, the Solo Women Run began as a run or walk designed to raise awareness about cancers, especially those that most commonly affect women. So taking part to raise awareness about a rare disease seemed absurd to me—something completely at odds with the project’s original purpose.
[06:59] But perhaps it was precisely this uniqueness and rarity that drew even more attention to us. This was evident in the looks from participants in other groups, from the women who supported and accompanied me on this journey; in the bows that event participants made toward our group’s banner, which read “Give a Breath” and referenced pulmonary arterial hypertension; and in the curiosity of passersby—and even my own groupmates—as they asked what the disease was.
[07:40] Because, you know, knowing that a friend—a male friend, a female friend, or someone you know—has a rare disease is one thing. But knowing its name, its symptoms, and even trying to understand a little bit about what their daily life is like—a daily life that isn’t visible—is something else entirely. And what better opportunity to do that than at one of these charity events, like the Solo Women Run?
[08:13] Breathing is the most important act for all human beings. It’s the first thing we do when we come into the world; it’s what we need when we run, when we walk, and when we perform the simplest acts of daily life. But it isn’t a natural act for everyone—not for those living with pulmonary arterial hypertension, for whom every breath is a victory in daily life.
[08:42] On this occasion, linking running—or a walk like the Solo Women Run—to the concept of “giving a breath” was the perfect way to convey the importance of having breath and to metaphorically give breath to those struggling with pulmonary arterial hypertension. And above all, perhaps, to offer hope for a world that is more aware of and sensitive to this disease. I’ll say it again: this is not something to be taken for granted.
[09:13] So, as I told my story—the story of how the group began, starting with a small group of women, my mom, and a few friends—a wonderful chain reaction took off: friends who brought in their moms, sisters, coworkers, neighbors, other friends, and so on. In no time at all, an idea turned into a close-knit, vibrant group of 230 people.
[09:44] Seeing all those women in pink walking and running alongside the 16,000 women—and not just them, because those were only the registered participants, but there were many others as well; seeing the “Dona un respiro” group—the group we’d created together—merged into a river of women with blue balloons and blue lips, a symbol of oxygen deprivation in pulmonary arterial hypertension; knowing that all those people were there for me, for us, and to raise awareness about our disease still fills me with an indescribable emotion to this day.
[10:30] And it instills a desire to live and to keep moving forward, both in daily life and through these events, these demonstrations, and these moments of raising awareness, providing information, and even learning about the simplest things.
[10:53] The Solo Women Run and the “Dona un respiro” group show that solidarity is a powerful force. You don’t have to do great things to feel alive and useful. You don’t need to do anything huge. Just being there is enough. Your presence is enough. It’s even enough to simply stand in silence beside those in need. Or simply to try to learn about what you don’t know.
[11:25] Every registration, every smile, every shared step becomes a concrete way to help break the silence that often surrounds rare diseases—including pulmonary arterial hypertension—and to offer hope and tangible support to patients.
[11:43] Devoting yourself to volunteer work—as I have done, as so many people do—by supporting an initiative linked to your own challenge, your own struggle, such as mine, is an act of profound transformation that changes the lives of others. It changes their perspective on an invisible rare disease—but perhaps not just on pulmonary arterial hypertension: on the world of rare diseases as a whole. And it radically changes the way you experience your own illness. It makes you feel alive and, above all, less alone in this battle.
[12:22] Thank you for watching this video. I hope it helps you on your journey, whether with pulmonary arterial hypertension or whatever battle you’re fighting. I encourage you to visit Alliance’s platform or YouTube channel to hear other wonderful testimonials. Thank you.