Illness as Experience (2000)

This is a moving and important documentary about a patient with neurofibromatosis and his dermatologist of over 40 years, Dr. Irwin Braverman. It may be hard to obtain, however the film maker, Angelo Volandes may have copies. Volandes was a student at Yale Medical School when he produced this film. He can be reached at: Email.

The film is appropriate for medical students, residents, physicians and all other care givers. It is an unsung gem that focuses on an illness and the doctor-patient relationship.

The Boy Whose Skin Fell Off

Jonny Kennedy had had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) - which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to a final struggle with skin cancer. In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March, that was an uplifting, confounding and the provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full. 2004

This is a moving documentary, well worth the effort to locate. It should be available relatively soon from DEBRA (dystrophic epidermolysis bullosa reasearch association)