What’s it like to have a rare disease or a rare cancer? There are lots of resources available which are informative and sometimes emotional. Here is a small selection of documentaries:
- Pink & Blue: Colors of Hereditary Cancer. This film from the USA highlights the effect on men, women and families with the BRCA gene mutation, which can lead to numerous cancers including breast.
- Available to watch on Vimeo (3mins 40 secs)
- Find out more about the film at pinkandbluemovie.com
- BREAST CANCER: In The Family. At 31, filmmaker Joanna Rudnick faces an impossible decision: remove her breasts and ovaries or risk incredible odds of developing cancer. In The Family follows Joanna as she takes us on a journey through the unpredictable world of predictive genetic testing.
- CYSTIC FIBROSIS: The Power of Two. Offering an intimate portrayal of the bond between half-Japanese twin sisters Anabel and Isabel, their battle with cystic fibrosis (CF) and miraculous survival through double lung transplants.
- Their story is also available as a book.
- Their story is also available as a book.
- DUCHENNE MUSCULAR DYSTROPHY: Darius Goes West. A multi-award-winning documentary in which 15-year-old Darius Weems – who has Duchenne Muscular Dystrophy (DMD) – sets off in his wheelchair and 11 pals across America.
- HUNTINGDON’S DISEASE: Twitch. This follows 18-year-old Kristen Powers as she undergoes genetic testing for Huntingdon’s Disease, which killed her mother.
- LEBER HEREDITARY OPTIC NEUROPATHY (LHON): This follows Jared and his family over two years as they cope with the impact of a disease which has left Jared permanently blind.
- PHENYLKETONURIA (PKU): For Katy. Katy was diagnosed with PKU at 13 months, and months without treatment took her toll on her and seven years later she has severe developmental delays.
- RARE DOCUMENTARIES AND FILMS: Patient, carer and professional perspectives on a range of rare conditions from globalgenes.org.
- UNDIAGNOSED: MEDICAL REFUGEES. This follows six families who have been fighting for answers for their unknown or unsolved illnesses, and what life is like when they finally get there.
Ultimately you can go back to the Resources page to browse more useful resources.