Jonathan "Jonny" Kennedy (4 November 1966 – 26 September 2003) was a British man who had a rare inherited condition known as dystrophic epidermolysis bullosa (EB or DEB).
[citation needed] After he was diagnosed with terminal skin cancer, Kennedy teamed up with filmmaker Patrick Collerton to make a video diary documenting the final few months of his life in order to raise awareness of his condition.
In the film, The Boy Whose Skin Fell Off, which also featured interviews with his friends and family, Kennedy opens up about his feelings concerning his impending death, and offers a glimpse into the life of someone with his condition.
It also helped raise £500,000 for the charity DebRA,[6] with the donations used to fund research, and to support families in the region affected by epidermolysis bullosa.
[citation needed] However, certain medical professionals considered it "too graphic" and noted that it had caused anxiety and distress in patients with similar conditions due to its focus on Johnny's impending death.