Hello everyone, my name is Dina Grajales. I am speaking to you today from Bogotá, Colombia, as a patient living with pulmonary hypertension, president of the Latin Society of Pulmonary Hypertension, and president of the Ayúdanos a Respirar Foundation in Colombia. I am very grateful to the Global Alliance for Pulmonary Hypertension for this invitation to participate, where we can contribute our experience from the Latin American region. The first thing I want to ask you to do today is to do something with me.
Let’s take a deep breath and let it out slowly. Such a simple act. Now imagine that something so simple becomes uncertain. Not in 20 years, not when you are older: today. And that is what changed my life 21 years ago. Not an accident, not a decision, but a diagnosis of pulmonary hypertension.
And with it came a question that no one teaches you how to answer: who are you when your life stops looking like what you had planned, like what the other people in your family believed was going to happen for you? So, when I was diagnosed, you do not feel strength, you do not feel hope, you do not feel that you are still alive with the same vitality you had before receiving this diagnosis.
At that moment, I also felt, like you watching this excellent talk, that my life was in disorder. I felt that my body was in disorder, my future, my identity, because there is something that is not said enough. The diagnosis does not only change your health; it also changes your narrative, the way you communicate. You go from planning your life to trying to hold it together. Sometimes we stop living and start thinking about surviving. And in that moment, I discovered something very uncomfortable.
No one prepares you to be a patient. Twenty-one years ago, there was not much information available in Colombia and in many other countries. And that is when you have to face a situation for which you were not prepared. In fact, even today, although we have more information, people who are not expecting this diagnosis are never taught how to be patients.
It is different when they begin to go through the process and start finding other people with this diagnosis, or patient organizations that provide support. No one teaches you how to understand your disease. No one teaches you how to defend yourself within the healthcare system either; nor how to emotionally sustain what cannot be seen because it is not noticeable, what is invisible to the eye. And that is where the real risk appears.
It is not only the disease. It is being left without direction, without a path. It is feeling, on many occasions, that your dreams stop or that you have to change them. That was a critical point, and I have to be very honest. It was a delicate point. And here is where I am going to say something that may make some people uncomfortable: not all patients transform. Some remain in fear, in uncertainty, others in resignation, some in silence.
And this is not weakness. Do not see it as weakness. But it is a decision that, although it is not conscious, is linked to the reality we have and to what we must face. I understood something that changed everything in my life: if I did not understand what was happening to me, no one would really be able to help me. The change truly had to begin with me.
And that is how my first act of power was born: deciding to learn. Learning from the best, learning from evidence-based studies, learning from those who had already walked this path, learning from professionals, learning about the therapeutic area, and learning from some people who had also overcome stages as difficult as living with pulmonary hypertension. This is where I speak to you about the butterfly effect. I want you to think about how you understand the butterfly effect for yourself. It is a process of construction.
And the idea is that one small movement can generate major changes. It is a process of transformation and, be careful, it was not big, it was not viral, it was not perfect. It was uncomfortable, clearly, because many times you have to step outside all the ideas you have or what people tell you. I started by asking many questions. I started by questioning many things; then by sharing what I was learning; then by supporting other people.
I also joined groups of people living with the disease, and something happened that I never expected. I never thought this would happen. My experience began to resonate. My process, which I had to embrace, understand, and also feel proud of being able to live through and transmit, started to reach patients who did not understand the diagnosis, families who did not know what to do, and people in other countries facing the same thing. That is when I understood that my story was not only mine; it was a collective tool.
It was a powerful tool to help others. And I did not become a mentor when I had answers. I became a mentor when I understood the value of those questions, because questions connect more than answers. Those who ask many questions learn a great deal.
I learned this especially in Latin America, where we have a region with fragmented healthcare systems, where patients do not only live with a disease, but also have to navigate many barriers. They have limited access to treatments, doctors, and referral centers, and diagnoses are still late.
And patients already arrive in a serious state of health, in fragmented healthcare systems, where in one country they may have access to the healthcare system, but there are different geographic areas where they will not. And here, the patient who learns becomes a bridge, and that changes the perspective.
Education is essential because when patients share knowledge, diagnosis is accelerated, decisions are improved, and informed decision-making together with healthcare professionals saves time. In other words, it gains time within healthcare processes, because we also have to talk about physical health. We also have mental health, which must also be cared for in our butterfly effect process. And sometimes, lives are saved. We have seen it.
Patients and families who have sought the right information at the right time anticipate disease progression and serious health states. Now I want to speak to you much more directly, as a patient, not as a speaker or as a mentor. If you are living with this disease or supporting someone who is, you have two paths. One path is to wait for someone to guide you, which many of us have had to do.
But you also have a second path, which is to become part of that guidance, because by sharing your story, you also contribute to those people. And here is a blind spot that many people have: they believe they need to be ready in order to help. But that is not true, from my perception and my experience. You only need to be willing not to remain silent. This is very important. Perhaps my diagnosis took away my certainties, things I had, other plans for life, but it gave me something much more powerful.
It gave me responsibility. It gave me responsibility for my story, awareness of what I am transmitting, whom I am guiding, whom I am supporting in Colombia, in Latin America, and globally; responsibility toward other patients; responsibility for what I could generate through my influence. And today, what began as an individual experience is part of a movement, a movement where patients and leaders educate, connect, and transform. And that is not small.
It is very important. When the social media movement began, I generated engagement with different pulmonary hypertension groups through technology. And this meant that when I arrived at the Latin Society of Pulmonary Hypertension, I already knew the different situations of patients depending on the country they were in. So I could support patients with much more knowledge of how things worked in their country.
And I want you to take this with you: perhaps you cannot change your diagnosis, but you can change its impact, because just one act, just one decision, just one conversation can be that flutter, like the butterfly’s wings, that starts something much bigger. That is the butterfly effect. My story has been a vehicle for transforming others. As I tell you, my story is not only mine. It has been for sharing, for educating, for supporting, for influencing, for generating support networks.
That is why I want you to take something home with you. The diagnosis does not define your impact; your response to the diagnosis does. And my story stopped being mine when it began to serve others. Thank you very much.