Melody Joy Paine, founder of Imperfect JOY, discusses how she captures the lies of patients with rare diseases through photography and filmmaking.
Melody tries to emphasize the person when capturing their story by focusing on what makes them who they are, such as their families and hobbies, not just their disease and the challenges that accompany it. This perspective gives others the ability to connect and relate to these patients in an easier manner. Ms. Paine also explains the importance of authenticity in her work and how best to accomplish that: by going into the patient’s environment and daily life. Her hopes are to preserve these memories and little moments for the families.
In the works are projects focused on myasthenia gravis, thyroid eye disease, and general rare disease collaborations with other organizations.
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To learn more about rare diseases, visit https://checkrare.com/
