Few and Far Between tells the story of Mia, a happy five-year-old who loves the pool, animals, and the color purple. But Mia is unique: she is living with Sjögren-Larsson Syndrome. It is a syndrome so rare its incidence is unknown, but doctors estimate around 100 people in the United States live with it. For Mia, neurological impairment associated with the syndrome means that she is still learning to walk, climb stairs, and hold herself upright. Her mental progress is two years behind that of other children her age, and she has ichthyosis: dry, scaly skin– a lifelong condition that will require a daily regimen of scrubbing and lotions. Despite the challenges she faces, Mia is progressing in physical therapy and just started kindergarten this year. No one knows how far she will progress as she gets older, but Mia’s parents are helping to give their daughter a normal life.
For nearly one in 10 Americans living with a rare condition, the challenges for diagnosis, treatment, and awareness come in addition to the daily needs of their disease. These rare diseases are considered “orphans”– individually they effect such a small portion of the population that they lack the potential for profit.
In 1983, the Orphan Drug Act was passed to encourage pharmaceutical companies to pursue research into rare diseases. That same year, the National Organization for Rare Disorders (NORD) was founded to advocate and unite patient groups across the country. Despite the progress made since 1983, 97% of rare diseases still wait for a cure.
Meredith Rizzo is a documentary photographer and video journalist based in Washington, DC. Few and Far Between is her MA thesis work.
Meredith will graduate from the Corcoran College of Art and Design in Washington, DC this spring and will continue shooting documentary work.
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Many thanks to: Advisors: Susan Sterner, Gabriela Bulisova, Tyrone Turner, Steve Elfers, Toren Beasley, Manuel Roig-Franzia, Josh Hatch Creating the eBook: Jeanne Modderman, Stewart Bean