Painting for PH Awareness and Patient Well-being

Social worker Lilian Cecilia Garzón Yory (third from left) is the PH patient leader and deputy director of projects for Fundación RHYO (Raras, Huérfanas y Oncológicas), a Colombian nonprofit organization. RHYO’s mission is to foster the well-being of people with cancer and rare or orphan diseases. In 2001, Garzón Yory was diagnosed with PH related to an atrial septal defect. Garzón Yory, of Bogotá, also has Eisenmenger syndrome and heart failure. Her story has been translated from Spanish.

What we create with our hands not only brings us emotional well-being but also allows us to generate resources to invest in materials and keep painting.

Lilian Cecilia Garzón Yory 

The RHYO Foundation painting group was born eight years ago with a simple yet powerful idea: to give patients and caregivers a space where illness wouldn’t be the center of the conversation. Painting became our pause – a moment we took to set aside diagnoses, appointments and worries and instead focus on brushes, colors and what each of us wanted to express.

When we decided to learn to paint, none of us knew how to hold a paintbrush, but we learned under the guidance of two patients with pulmonary hypertension – Sandra Blanco and Mónica Torres. At first, only a few patients managed to sell their work, so we decided to reinvent ourselves and paint tote bags.

Over time, we discovered that our work held a double value. What we create with our hands not only brings us emotional well-being but also allows us to generate resources to invest in materials and keep painting.

Each piece that is sold or exhibited is transformed into new paints, canvases and brushes. And most importantly, the money we raise from selling the tote bags helps fund recreational activities that improve our quality of life. The proceeds allow us to go out, laugh, share and create memories together.

Today, this is our way of showing that we are still alive, creative and united. We paint not just to generate funds, but because it represents a source of hope that keeps us moving forward.

Conference bound

For the past three months, patients and caregivers from the RHYO Foundation worked with a special sense of excitement. We prepared our artwork so attendees at PHA 2026 International PH Conference and Scientific Sessions could enjoy and learn about our work. We distributed 500 bags at PHA 2026 so more people could see our art born from resilience and hope.

In 2024, we brought 24 bags to PHA 2024 in Indianapolis. Then-PHA Chair Tony Lahnston came over to our table to take a look, so we offered him one featuring a purple butterfly. He was deeply moved, telling us that his niece, who had died from PH, loved butterflies, and the bag reminded him of her.

I have attended every PHA conference since 2016 in my capacity as an organization leader. At times, I was the only representative from the foundation, as my colleagues often couldn’t obtain visas or PHA scholarships. Attending the conference is a unique opportunity to stay up to date and learn about new PH advancements. We then can share that knowledge with our group and improve care for everyone.

Empowering patients

RHYO provides guidance about diagnoses, treatments and how to navigate the healthcare system. Many people come to us feeling lost amid the maze of authorizations and paperwork.

We also offer workshops, emotional support and activities for patients and caregivers. We want to make sure illness doesn’t consume their entire lives. Our work also helps strengthen the family unit: When one person falls ill, the whole family is affected. We work with parents, siblings and caregivers.

If anyone reading this feels connected to what we do, we would be delighted to hear from you.