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The heartbreaking truth about purpose
1:00
The heartbreaking truth about purpose
1.7M views8 months ago
YouTubeGrowth District
John Hudson lives with epidermolysis bullosa (EB), a rare condition that makes his skin incredibly fragile and turns everyday life into a constant battle of care and pain. Through Special Books by Special Kids, his story has touched millions, not just for his resilience, but for the unwavering devotion of his father. From daily bandage changes to endless hospital visits, his dad has never left his side, carrying both the physical and emotional weight with quiet strength. Their bond has become a
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John Hudson lives with epidermolysis bullosa (EB), a rare condition that makes his skin incredibly fragile and turns everyday life into a constant battle of care and pain. Through Special Books by Special Kids, his story has touched millions, not just for his resilience, but for the unwavering devotion of his father. From daily bandage changes to endless hospital visits, his dad has never left his side, carrying both the physical and emotional weight with quiet strength. Their bond has become a
8.8K views6 months ago
FacebookThe Quote Circle
The Boy With Butterfly Skin
6:09
The Boy With Butterfly Skin
1.4M viewsOct 26, 2012
YouTubeJoe Purdy
Teen with rare skin disease shares his touching story
5:53
Teen with rare skin disease shares his touching story
21.4K viewsJul 19, 2017
YouTubeStaten Island Advance
La Vida Vici on Instagram: "John Hudson Dilgen: A courageous Staten Island teen battling Epidermolysis Bullosa (EB), a rare genetic disorder causing fragile skin that blisters and tears easily, leading to chronic pain and daily bandaging. Despite severe medical challenges, including recent hospitalizations for a PICC line, seizures, a femoral fracture, and pneumonia, John remains resilient, inspiring fundraisers like the Polar Plunge to support his care and EB research. #explore #foryou #hospita
1:14
La Vida Vici on Instagram: "John Hudson Dilgen: A courageous Staten Island teen battling Epidermolysis Bullosa (EB), a rare genetic disorder causing fragile skin that blisters and tears easily, leading to chronic pain and daily bandaging. Despite severe medical challenges, including recent hospitalizations for a PICC line, seizures, a femoral fracture, and pneumonia, John remains resilient, inspiring fundraisers like the Polar Plunge to support his care and EB research. #explore #foryou #hospita
2.8K views11 months ago
Instagramthevidavici
John Hudson Dilgen, a Staten Island resident and tireless advocate for Epidermolysis Bullosa researc
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John Hudson Dilgen, a Staten Island resident and tireless advocate for Epidermolysis Bullosa researc
776 views2 months ago
YouTubeStatenIslandToday
Teen with rare disease gets new home courtesy of Tunnel to Towers Foundation
4:00
Teen with rare disease gets new home courtesy of Tunnel to Towers Foundation
23.9K viewsNov 21, 2018
YouTubeStaten Island Advance
4:15
Epidermolysis Bullosa (Year of the Zebra)
40.5K viewsMar 12, 2023
YouTubeOsmosis from Elsevier
49:21
Butterfly skin: Caring for patients with epidermolysis bullosa | Ep.1: Health Compass Podcast
4K views4 months ago
YouTubeStanford Medicine
4:40
Epidermolysys bullosa: Daily tasks excruciating for teen with rare disease
111.6K viewsJan 30, 2017
YouTubeStaten Island Advance
1:40
Strangers Raise $100G For Boy With Rare Skin Disease Covered In Burns
77.6K viewsFeb 2, 2017
YouTubeInside Edition
5:51
What is Epidermolysis Bullosa (EB)?
5.1K views9 months ago
YouTubeLectures on Human Diseases and Genes
1:49
What is Epidermolysis Bullosa?
196 views5 months ago
YouTubeRare Disease Roundup
0:55
The Race to Cure the Butterfly Disease | Matter of Time #eddievedder #epidermolysisbullosa #healeb
1.5K views5 months ago
YouTubeEB Research Partnership
1:26
EPIDERMOLYISIS BULLOSA: FROM THE UNKNOWN TO THE UNSTOPPABLE
348 views7 months ago
YouTubeEB Research Partnership
0:48
The Painful Reality of Living With Fragile Skin
29.5K views4 months ago
YouTubeDoctor Sood
1:44
Jacob's story
1.5K views2 months ago
YouTubeThe Royal Children's Hospital Melbourne
1:07
Epidermolysis bullosa is not easy 😓
50K viewsMay 15, 2025
YouTubeDia a Dia com Amanda
42:53
Junctional Epidermolysis Bullosa: Disorder, Pathology, and Sub-types
2.1K viewsMay 18, 2024
YouTubeSkinSire
0:31
One Week Until a Rare Disease Story Reaches the World #eddievedder #epidermolysisbullosa
902 views5 months ago
YouTubeEB Research Partnership
32:26
Exploring the Latest Updates in the Epidermolysis Bullosa Treatment Landscape
503 viewsDec 3, 2024
YouTubeLiVDerm: Revolutionizing Dermatology Education
1:56:26
Behind the Film “Matter of Time” | EB Community Town Hall on Progress, Hope, and the Path to a Cure
89 views4 months ago
YouTubeEB Research Partnership
1:30
20-year-old John Hutchins lives with epidermolysis bullosa, a rare and painful disease that results in sores and blisters on his skin. Now, he’s part of a new documentary raising awareness of the disease. ❤️‍🩹 If you need someone to talk to, call: • Lifeline on 13 11 14 • Kids Helpline on 1800 551 800 • MensLine Australia on 1300 789 978 • Suicide Call Back Service on 1300 659 467 • Beyond Blue on 1300 22 46 36 • Headspace on 1800 650 890 • QLife on 1800 184 527 Choose your news on the ABC NEWS
2.1K viewsAug 15, 2024
FacebookABC Adelaide
17:50
Supporting healing in epidermolysis bullosa: Innovations and new directions for care
778 viewsDec 3, 2024
YouTubeTouch Medical Media
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