Living with a rare or chronic illness is a journey marked by uncertainty, resilience, and the power of community. For the last 10 years at Patient Worthy, individuals from all walks of life have come together to share their stories, not just of challenges faced, but of remarkable qualities that shine through in the darkest moments. Today we bring you some of our past stories from people whose experiences exemplify advocacy, resiliency, bravery, hope and strength. Their voices remind us that behind every diagnosis is a story worth telling, and that by sharing these stories, we can inspire understanding, foster connection, and ignite positive change for patients everywhere.
Our first article, published back in 2015, tells the story of Tracey who was initially dismissed by doctors as “crazy,” but through remarkable willpower and determination, she persisted in seeking answers and ultimately proved her Hereditary Angioedema was real.
When Tracey was originally diagnosed, her initial doctor thought she was just being neurotic.
Her journey highlights the importance of self ADVOCACY and resilience in the face of medical skepticism. Read Tracey’s full story here.
Jill shared her story with Patient Worthy in 2016 that highlights her incredible strength in coping with the challenges of Acromegaly, including dramatic changes in appearance and health, while learning to accept her new self. Despite uncertainty and fear, she demonstrates RESILIENCE by facing her diagnosis head-on and finding ways to adapt and move forward.
I know that I will never look exactly like I did before this condition affected me, but I have worked hard to get my quality of life back. I consider myself beautiful now, and I embrace all the lessons that living with a rare condition has given me.
To read Jill’s full story, go here.
Young Liam, who was interviewed by Patient Worthy in 2024, displayed unbelievable bravery when he faced the challenges of KAND and underwent treatments at Shriners Children’s Hospital. Despite his diagnosis, Liam confronts each obstacle with determination and an unwavering BRAVERY, and we were lucky to share his story!
KAND doesn’t keep me from life. I’m still very capable. I can still do hard things.
Read Liam’s full story here.
Patient Worthy shared another story in 2020 that emphasized the importance of HOPE, especially during the heart of the Covid pandemic. In this article, we learned about Adam who was diagnosed with Cobalamin-C deficiency at 1 week old that cause a multitude of disabilities but never stopped him from living his life to the fullest. Adam’s story and artwork is living proof of the impact of hope and optimism, even in the face of difficult challenges.
Go here to read all of Adam’s story.
The last article spotlight signifying the STRENGTH of our patients was publish in 2019 is about Anna Landre, a young woman with remarkable strength as she fiercely advocates for her right to work while living with spinal muscular atrophy. Despite facing systemic barriers and challenges, Anna’s resolve enabled her to fight for independence and inspire others in the disability community.
Landre remembers hearing the news that she was a “special case,” and that others like her couldn’t expect similar treatment. “I’m not an extra hyper-achieving disabled person,” she pointed out. “All disabled people want these things.
Read more about Anna here.
These narratives remind us of the power of community and the importance of sharing stories to inspire understanding and drive positive change. As we move forward, Patient Worthy remains committed to bringing more voices to light, ensuring that every patient’s story is heard and celebrated.
