Suvechha Sarkar
In TLC’s ‘Body Bizarre’, the audience gets a closer look at the lives of individuals who are living with rare and often misunderstood medical conditions. The series not only goes beyond the diagnosis but also offers the emotional and daily realities of extraordinary health challenges. John Hudson Dilgen came into the limelight in season 8, episode 2 of the show, titled ‘The Worst Disease You’ve Never Heard Of.’ Since the time of his birth, his life has been shaped by an unrelenting battle with a rare genetic disorder, Epidermolysis Bullosa (EB), a painful condition that makes his skin quite fragile. For John and his family, the search for relief became a constant journey filled with hospital visits and specialist consultations to look for a cure.
John Hudson Dilgen is Determined to Inspire Others After Finding no Cure For His Condition
From the moment John Hudson Dilgen was born, it became clear that his life would be anything but ordinary. He entered the world with a very rare genetic condition, Epidermolysis Bullosa (EB), a disorder that can turn even the gentlest touch into a source of agony. It makes the skin so fragile that even the slightest friction can cause severe open wounds and blistering, turning one’s everyday activities into excruciating ordeals. As John grew older, these challenges grew, but in the meantime, his family never gave up on their relentless search for every possible treatment for the condition. Each of his new appointments carried a flicker of hope, but unfortunately, he was met with the same truth that there is no cure for EB.
Over the years, John endured complications and faced the reality of managing relentless pain. Some of the complications that he faced included sepsis, fractured bones, seizures, and other worsening symptoms of EB. He even described his pain as feeling like third-degree burns, not only covering his body but inside as well. Yet, John refused to let his condition define him. Instead, he turned his struggle into a mission by sharing his story openly. He consistently urged medical professionals to pursue meaningful breakthroughs, hoping that future generations would not have to endure what he had. Although John admits that he has no idea how much time he has left, he aims to leave behind a lasting impact.
John Uses Social Media to Raise EB Awareness and Promote Fundraisers
As John Hudson Dilgen grew older, the challenge of living with EB only intensified. Yet, from a very young age, he found a way to connect with the world through social media. On Instagram, he has cultivated a following of over 3.6K, while his Facebook page has grown to a community of over 13K. Long before his appearance on ‘Body Bizarre,’ John first came into the public eye through the show ‘Special Books by Special Kids (SBSK),’ where he gave over six interviews over 9 years. Each of those interviews became a vital outlet, allowing him to express the realities of EB while spreading awareness and educating others about the condition. Over time, John’s voice grew louder, which helped him shine on the national stage and build momentum for the first-ever FDA-approved treatment for EB.
By November 2018, John reached a turning point in his life, with the support of the Tunnel to Towers Foundation. The organization helped John and his family move into a fully accessible, mortgage-free smart home, granting him the independence he had always dreamed of. His story has since reached countless media outlets, including his feature on ABC7. In December 2025, he gave the most recent interview with ‘SBSK,’ during which he revealed that his health had been declining over the past year. John further disclosed that everyday tasks, such as talking and reading, have also become quite painful for him. However, he still fosters the mission to help find a cure for EB so that future generations do not have to face the pain that he has suffered in the 23 years of his life.
The six interviews John has done with ‘SBSK’ have raised more than half a million dollars for EB research, with the last one alone raising over $37K. He has also gained renewed hope after learning about the development of the first FDA-approved treatment. Beyond medical updates and fundraising for research, the 23-year-old often lets his strong online community support his personal endeavors on special occasions, such as his birthday and Christmas. In July 2025, he also disclosed his thoughts on starting his own business. Throughout his ordeals, John continues to receive an outpouring of love from his supporters around the world, who often lift him up with encouraging messages like “Hope you’re doing okay, you’re so amazing.”
John Draws Strength From His Loved Ones As He Copes With His Father’s Passing
Aside from his tireless advocacy for EB, John has always made one thing clear that his greatest strength comes from his family. Through every hospital visit, setback, and small victory, he always found his parents, Faye and John Dilgen Sr., his elder sister Kalilla, and his older brother Teague. From playing together with his siblings to spending meaningful time with his family on New Year’s Eve and Halloween, their bond is truly remarkable. The inspiring personality and his father had originally connected over their shared love for movies and Japanese culture, including anime and comics. However, John and his family faced a profound loss in July 2023 when John Sr. passed away at the age of 67, after battling cancer. The unfortunate loss left an immeasurable void in their hearts that can never be filled.
Despite the major heartbreak, John continues to find immense strength in the presence of Faye, Kalilla, and Teague. He never misses a chance to express his gratitude to them and to wish them a happy birthday with heartfelt messages. In July 2024, to honor his father’s death anniversary, John shared that his family was hosting a Be the Match Bone Marrow Swab event, with the MDS Foundation at the forefront. It served as a touching tribute that reflected remembrance and hope. Beyond everything, he finds joy in simple pleasures like playing video games, sledding down snowy slopes, and going fishing. Recently, he has seemingly stepped away from social media and hasn’t shared any recent health updates. However, we do hope that John is doing well and finding moments of peace amid life’s challenges.
Read More: Where Are Erika and Eva Sandoval Now?
