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15 Photos Show What It's Like To Live With Muscular Dystrophy

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    Photo: Claudia Gori.

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    Photographer Claudia Gori met Camilla Nielsen a year and half ago, just as Gori was about to begin her final project at the Danish School of Media and Journalism. She felt an instant connection with Nielsen and knew right away that her project should tell her story. Nielsen was diagnosed with muscular dystrophy as a child. Now 33 and a mother of three, she lives with her condition rather than in spite of it.

    Muscular dystrophy is a chronic disease that prevents the production of healthy muscle. People who suffer from it usually experience weakness, low muscle mass, and limited or even loss of movement. There's no cure, but it can be managed — Nielsen sees a physical therapist weekly and uses a scooter or wheelchair when she's too weak to walk. In an exchange over email, Gori told Refinery29 how Nielsen's condition affects her life as a mother.

    "Camilla’s body is in worse condition than before the pregnancies," Gori said. "She often gets tired and she can’t lift her children."

    Pregnancy exacerbates the symptoms of muscular dystrophy, and there's always a chance that the disease could get passed on to the children. Nevertheless, Nielsen "has never regretted [her pregnancies], because being a mother has always been her biggest desire," Gori told us.

    Together, Nielsen and Gori hope to raise awareness for muscular dystrophy, with Nielsen lending her face and name to the cause. "I didn’t want to make a story about a disability," Gori said. Instead, her photos, in all their quiet intimacy, tell a story "about the daily life of a person affected by a disability who lives every day with vigor and courage."

    Click through to see 15 of Gori's photos from her series, My Name Is Camilla And I Love My Life, along with Gori's descriptions of Nielsen's life with her boyfriend Jesper and three children.


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  2. Photo: Claudia Gori.

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  3. Photo: Claudia Gori.

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  4. Photo: Claudia Gori.

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  5. Photo: Claudia Gori.

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  6. Photo: Claudia Gori.

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