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John DilgenAmerican teenager with dystrophic epidermolysis bullosa
Country:
 USA |
Content:
- Birth and Diagnosis
- Living with RDEB
- Medical Treatments and Initiatives
- Clinical Trial and New Hope
- Raising Awareness and Support
Birth and Diagnosis
John Dilgen, a 14-year-old from Staten Island, New York, was born with a rare genetic disorder called epidermolysis bullosa (EB). This condition causes his skin to be extremely fragile and easily peel due to a lack of collagen VII. Within 16 months, John was diagnosed with the most severe form of EB, recessive dystrophic EB (RDEB).
Living with RDEB
RDEB affects not only John's skin but also his eyes, mouth, esophagus, and internal organs. His skin is prone to blistering and breaks, leaving him vulnerable to infections. Due to the pain and wounds, walking has become challenging.
Medical Treatments and Initiatives
John's daily routine involves painkillers and baths with bleach to prevent infections. Recently, his cousin launched a YouTube campaign to raise funds for a special oxygenated water tub that would facilitate faster skin regeneration.
The crowdfunding initiative raised over $108,000, surpassing the initial goal of $40,000. Contractors and professionals volunteered their services to install the new tub.
Clinical Trial and New Hope
John will soon participate in a clinical trial at Stanford University that involves gene therapy. Six small skin transplants with corrected DNA will be used to patch his wounds.
Raising Awareness and Support
To raise awareness and support, John's mother and family will join the New York City Half Marathon, donning green shirts and tutus as "Sister Act."
