We are rare, but together we are stronger!

Carolina -  A pioneer who created a desmoid community in Brazil

Back in 2002, when I was first diagnosed with a desmoid tumor during my adolescence, I received the news in a rather bewildering manner. Not even the doctor who was treating me knew exactly what it was.

Finding doctors who were familiar with desmoid tumors proved to be a challenge. It took years of searching, and I encountered much misinformation along the way. Unwilling to accept this, I began researching the condition and attempted to connect with others suffering from the same disease. I created a blog and started sharing my story. Knowing that most people didn't understand English, I began translating the studies that I found online into Portuguese.

That's when everything began to change: I started connecting with other patients from all over Brazil who shared the same doubts and anxieties. It was comforting to know that I wasn't alone. But merely connecting with other patients wasn’t enough; there was a need to exchange experiences with each other. After several failed attempts on other platforms, I created a community on Facebook that became the go-to place for any Brazilian "Desmoidian" feeling lost.

As the group grew, other patients joined, like Ronaldo Vieira, who organized the WhatsApp group and brought everyone closer. It became a community meeting place, where exchanges and expressions of care for each other are always taking place — a patient who was welcomed today welcomes someone else tomorrow. It's beautiful to see it happen so organically.

Georgia – From seeking help to giving voice to many

In 2018, I found myself grappling with a daunting diagnosis: a desmoid tumor nestled in my abdomen. Like many people in my shoes, the prospect of undergoing aggressive surgery loomed large, threatening to derail my life, particularly my vibrant artistic pursuits, as I run a dance and art space. Amid conflicting advice from medical professionals — some advocating immediate intervention, others advising a wait-and-see approach — I sought solace and clarity within the online community.

But it wasn't until the disruptive arrival of the pandemic in 2020 that fate would unite Carolina and me. Together with the Desmoidian Flávia Monteiro, we spearheaded Brazil's inaugural "September Awareness” campaign, leveraging Instagram's live platform to convene experts in discussions ranging from desmoid tumors and mental well-being to healthcare advocacy and nutritional support. For patients, these sessions weren't just informative — they were transformative, offering a newfound sense of empowerment and visibility in a world often fraught with uncertainty.

Teaming up to create Desmoid Brasil!

This was the turning point for us.  We realized that as patient group leaders, we could only do so much. In 2021, we founded the patient organization Desmoide Brasil with the aims of empowering patients, raising awareness among medical professionals, and mobilizing the industry.

In less than three years, Desmoide Brasil has hosted two National Desmoid Tumor Symposia, organized an exhibition at the Brazilian Federal Senate, and begun collecting epidemiological data on patients through their registry for the organization.

In Brazil, patients often lack quality information about rare diseases in general. Desmoide Brasil seeks to bridge that gap for Desmoidians. When patients find Desmoide Brasil, they receive a welcoming booklet written in cooperation with Dr Philippos Costa, M.D., which explains what a desmoid tumor is, which healthcare professionals to consult, what to expect from treatment options, and the goals of the patient organization.

 

The last National Symposium featured national sarcoma experts, international professionals, a roundtable of rare disease patient advocates, and an entire day of integrative practices for patients. Desmoide Brasil aims to promote unity, disseminate knowledge, empower all newly diagnosed patients so they can feel strong and be active protagonists in the management and care of their rare disease.

Desmoide Brasil is a growing organism built by many hands. Each small contribution makes the whole bigger and stronger.

We are only the faces of the organization, so to speak, and the two of us can’t do great things alone. It is essential that the whole group comes together for the organization to thrive.

 

That’s why we always say: We are rare, but together we are stronger!

Photo credits:  Fernanda Hernandez, Janaina Caruzo, Desmoide Brasil