If you’ve spent any time in the corner of the internet that highlights human resilience, you’ve likely seen his face. Maybe it was the video with Chris Hemsworth, or perhaps the viral interview with Chris Ulmer from Special Books by Special Kids. John Hudson Dilgen isn't just another viral story. He’s the guy often called "the strongest man in the world," not because he’s lifting plates in a gym, but because he’s spent every second of his 23 years living in a body that is essentially an open wound.
People always ask: what happened? Where is John Hudson Dilgen now?
The truth is heavy. It’s not a "he’s all cured and running marathons" kind of update. Epidermolysis Bullosa (EB), the condition John has, doesn’t really work like that. It’s a relentless genetic disorder where the skin lacks the "glue" (collagen) to stay attached to the body. Imagine having second and third-degree burns over 80% of your body, every single day. That is John’s baseline.
The Shift to Palliative Care
Honestly, the most recent updates from the Dilgen family have been a bit of a gut punch for long-time supporters. As of 2025 and heading into 2026, John has transitioned into palliative care.
That phrase sounds scary. Usually, people equate it with "giving up," but for John, it’s about quality. After decades of "intractable pain"—the kind of pain that medication barely touches—the focus has shifted toward making him as comfortable as possible. His body has taken a massive toll. We’re talking about years of infections, surgeries, and the sheer metabolic exhaustion of the body trying to heal wounds that never actually close.
Recently, things got incredibly intense. He was admitted to Cincinnati Children’s Hospital—a hub for EB specialists—to have a PICC line placed.
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Why? Because eating had become a battleground.
John started Total Parenteral Nutrition (TPN). Basically, he’s getting his nutrients delivered directly into his bloodstream because his esophagus and digestive tract are also affected by the blistering. It’s hard to heal skin when you can't get enough calories to fuel the process. This move was designed to take the "anxiety out of eating" and hopefully give him the energy to keep fighting for the one thing he’s always wanted: a cure.
A Brutal Run of Medical Hurdles
The last year hasn't been kind. While in the hospital for what was supposed to be "routine" care, John hit a streak of bad luck that would break most people. He suffered a seizure. Then, he suffered a femoral neck fracture in his leg—a break that required surgery to pin the bone back together.
Imagine having a broken leg when your skin is too fragile to even hold a standard bandage.
He then developed pneumonia and ended up in the ICU. For a while, the community was holding its breath. But John is, if nothing else, stubborn. He made it back home to Staten Island via a medical flight (an "air ambulette") because his wish was to be back in his own space, with his dog Dash and his cat Romeo.
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Life in the "Smart Home"
If you remember back to 2018, the Tunnel to Towers Foundation built John a custom "smart home" in Tottenville. That house is still his sanctuary. It has:
- An elevator to save his energy.
- A specialized medical treatment room for the hours-long bandage changes.
- A high-tech hydrotherapy tub (the Microsilk tub) that uses microbubbles to clean his skin without the agony of traditional scrubbing.
The Hope for a Cure: It’s Not Just a Dream Anymore
You might wonder why he keeps pushing through such an objectively miserable level of pain. It’s because the science is actually catching up. For the first time in John's life, there are FDA-approved treatments that didn't exist when he was a kid.
He was a massive advocate for the first-ever topical gene therapy for EB. This isn't a "cure" in the sense that it changes his DNA forever, but it’s a gel that can be applied to wounds to help them actually close and stay closed for a while. It’s a game-changer.
John has always said he’s fighting to stay alive long enough to see the "big one"—the definitive cure. He’s not just a patient; he’s a pioneer who has helped raise over $70 million for the EB Research Partnership. Every time you see his face on a fundraiser, know that those funds are going into clinical trials that are currently testing systemic gene edits and cell therapies.
What We Can Learn from John Hudson Dilgen Now
John’s story is often framed as "inspiration porn," but if you listen to him speak, he’s much more real than that. He’s funny. He’s frustrated. He’s a Harry Potter fan who uses movies to escape a reality that is often unbearable.
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The biggest misconception? That he's "suffering" in a way that makes his life not worth living. John has repeatedly expressed that while the pain is "miserable," his life has value because of his family, his advocacy, and his connection to the EB community. He doesn't want pity; he wants progress.
Current Health Status Summary:
The reality is that John is 23 years old and facing the advanced stages of a progressive disease. He is often bedridden, reliant on TPN for nutrition, and requires 24/7 care. However, he remains stable at home on Staten Island as of early 2026, supported by his mother Faye and a dedicated medical team.
How to Actually Help
If you're looking for ways to support John or the thousands of "butterfly children" like him, don't just "send thoughts."
- EB Research Partnership: This is the organization John champions. They fund the actual science that leads to the gene therapies he uses.
- Community Fundraisers: The Staten Island community often holds events like the "Super Bowl Plunge" to help the Dilgen family cover the astronomical costs of medical supplies—bandages alone can cost tens of thousands of dollars a year because insurance is, frankly, a nightmare to deal with.
- Blood and Plasma Donation: Patients with EB often require transfusions due to chronic anemia from blood loss through their skin.
John Hudson Dilgen is still here. He’s still fighting. He is the living embodiment of the idea that a person is not their diagnosis, even when that diagnosis tries to claim every inch of their skin.
The next step is simple: stay informed. Follow the progress of gene therapy trials and keep the pressure on for rare disease funding. The "strongest man in the world" has done his part; the rest is up to the scientists and the support of the public to cross the finish line.