From diagnosis to purpose: how living with portal hypertension inspired The Kindness & Smile Zone
Having a rare diagnosis, like portal hypertension, can flip your whole routine overnight. One day you are simply enjoying life, and the next you are dealing with tests, hospital visits, and follow-up calls. There is a lot to track, and the health system can feel hard to figure out alone.
Living with a rare illness is personal and often also feels lonely. The hard part is not only managing one’s body and symptoms but also that most people you see daily do not understand what it means to start each morning with these same issues.
Throughout my own health journey, I noticed something that can sometimes be missing in the way people think about medical care. Doctors and nurses work hard on the body as they plan treatments and watch symptoms. But when a rare diagnosis hits, the worry in the house is also hard to treat. Patients and families often handle that part by themselves.
In those late and tense moments, I learned something important. Getting support from other people matters. Being seen, heard, and understood matters. Small gestures can ease a hard day. In the end, kind attention is as important as medical help.
That idea led me to start The Kindness & Smile Zone.
Turning Personal Struggles into Positive Action
Turning my ambitious dream of The Kindness and Smile Zone into something real was not easy at first. I wanted to make sure that people with a health condition do not feel left out. Living with a health condition myself, portal hypertension, has taught me a lot about resilience and courage. It also pushed me to care more deeply for other families, patients, and young people dealing with similar issues.
"It [portal hypertension] also pushed me to care more deeply for other families, patients, and young people dealing with similar issues."
Our work is simple in its goal, but it can still change how people feel. We want to bring hope to patients and to the people who care for them. We also want to build a kinder world together for all. A world in which everyone is equally heard, seen, and respected.
We focus on small and intentional acts of kindness that bring light into difficult days. Whether we are coordinating uplifting card-making drives for patients facing long hospital stays, organizing global webinars, or running community events, our goal remains the same. We aim to remind people in the rare disease community that their diagnosis does not define their worth, limit their potential, or dictate their ability to live a fulfilling life
The Role of Mental Health in Rare Disease Care
People in rare disease discussions often talk about care plans, studies, and physical management. However, mental and emotional health are equally important components for someone with a chronic condition. Constant checkups, symptoms that arise without warning, and constant life changes can cause significant burnout. This stress can hit not only patients, but also the people who support them at home.
At The Kindness & Smile Zone, we advocate for a wider view of rare disease support. We aim to care for the full person, not only for their diagnosis. When someone feels safe and backed by a community that shows up for them, they often cope better with the everyday health strains. Kindness is more than simply being empathetic or polite. Kindness can become an active form of encouragement that helps restore hope during moments of hardship for many children and their families/communities.
Empowering Youth and Redefining Advocacy
I’m a young founder, and talking about youth leadership in the rare disease space is particularly close to my heart. When young people live with rare conditions, they bring a fresh, dynamic, and essential perspective to advocacy. They also know what it feels like to juggle school, friends, growing up, and plans for the future, all while dealing with health issues that do not seem to go away. With The Kindness and Smile Zone, my goal is to show other young people that their lived experience with health challenges is not a limitation; it is actually their greatest strength.
Having a rare condition does not mean you have to wait until you are older to help others or speak up. When youth share their stories and focus on emotional health, they can push back against unfair labels, make spaces more welcoming, and help society see chronic illness in a new way. When younger patients see people their age taking ownership of their story and creating solutions, it often inspires them to use their own voices. Youth-led groups can add real momentum to the rare disease space. They bring fresh thinking, honest voices, and a sense of belonging that can last. Over time, this helps shape a path where care and community support are part of each patient’s day-to-day experience.
"Having a rare condition does not mean you have to wait until you are older to help others or speak up."
Looking Ahead: Building a Compassionate Future
Living with a rare condition can feel like a long road. There are always good days and hard days. However, no one should have to face this all by themselves. When people share their own experiences and stand up for the rare disease community, those tough moments can lead to real positive change.
Looking ahead, my aim with The Kindness & Smile Zone is to expand its reach, collaborate with fellow advocates, and push to make kindness, empathy, and mental health central pillars of rare disease care. Every smile and every lived experience matters. Together, we move closer to a time when every rare disease patient feels supported, empowered, and fully heard.
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