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PODCAST: THRIVE Part 16: A KZN woman with facio scapula humeral muscular dystrophy shares her story

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A woman from KwaZulu-Natal woman Christel Rohrs was diagnosed with facio scapula humeral muscular dystrophy (FSHD) in 2019.

According to the Muscular Dystrophy Association, FSHD is a genetic muscle disorder in which the muscles of the face, shoulder blades, and upper arms are among the most affected.

The term muscular dystrophy means progressive muscle degeneration, with increasing weakness and atrophy (loss of bulk) of muscles.

The face, shoulders, and upper arms are the first and most severely affected muscles in FSHD, however, other muscles are usually affected as well.

FSHD is the third most common type of muscular dystrophy, behind Duchenne and Becker muscular dystrophies and myotonic dystrophy.

The estimated prevalence of FSHD is about 4 cases per 100 000 individuals.

Rohrs shares her journey with disability, personal achievements, aspirations and challenges with SABC Digital News Producer Lebo Tshangela in this bi-weekly feature, Thrive.

She says, “My identity is not in my body and I am not my body because my body is not perfect.”

Below is the full podcast:

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Related: THRIVE Part 8: Mosala Makhetha shares his experience of being a Deaf person in SA

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Related: PODCAST: THRIVE Part 15: Former MP, Andrew Madella shares his story about disability

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