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

Photo: Claudia Gori.
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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Photo: Claudia Gori.
"Camilla struggling while dressing herself. Putting the dresses on is one of the most difficult things for Camilla to do. She has little strength in her arms, and she needs to sit down and spend time to dress herself every morning after the shower."
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Photo: Claudia Gori.
"Camilla’s legs. On the right thigh she has a big scar from the biopsy the doctor did when she was 3 years old. By examining this sample, doctors can distinguish among different forms of muscular dystrophy."
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Photo: Claudia Gori.
"Camilla [kneeling down on the play mat] to spend time with her daughters. She can't lift her children; that’s why the only way to hug them is to lie down."
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Photo: Claudia Gori.
"Camilla during her weekly session [with] the physiatrist. The exercises aim to stretch the muscles, release them from the tension, and to delay the progress of the disease."
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Photo: Claudia Gori.
"Camilla feeding her twins, Agnes and Esther Granau, 5 months at that time, who are lying on the table so that Camilla can have support for her arms."
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Photo: Claudia Gori.
"On the left, a detail of Camilla's garden. On the right, Camilla's back."
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Photo: Claudia Gori.
"Portrait of Camilla."
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Photo: Claudia Gori.
"Camilla on the scooter she uses to go out. She can't walk more than few steps, and the scooter is the only way to move faster when she has to go out."
9 of 15
Photo: Claudia Gori.
"Camilla leaning on the wall of the lift of the hospital to support her body."
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Photo: Claudia Gori.
"Camilla with her boyfriend Jesper Granau in their home in Randers, Denmark."
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Photo: Claudia Gori.
"Camilla is taking a shower while sitting on a little chair. Washing her body is one of the most difficult things to do for her, because she has to use all her body to clean herself."
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Photo: Claudia Gori.
"Camilla helping her kids having a bath."
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Photo: Claudia Gori.
"Camilla putting the twins to bed while sitting on her chair."
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Photo: Claudia Gori.
"Camilla playing with Ella who climbed the wheelchair to hug her mother."
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Photo: Claudia Gori.
"Camilla hugging Ella, sitting on her legs, in their living room at home."
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