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An Unexpectable Life: Inside Spinal Muscolar Atrophy

Alexandra Mantovanelli-Krantz | Netherlands

If you look at her,
you can see a red haired young girl,
smiling with the courage of a lion
in the middle of nature;
where she loves to be.
It helps her to relieve
her stress and her challenges.

Jana and I met when both of us were studying as Patient Experts in Barcelona last year. She lives in Sofia (Bulgaria) with her parents, while completing het thesis as PhD student at the University of Sofia “St. Kliment Ohridski”. She is also working as a freelance journalist for different Bulgarian websites. She would love to live on her own, but social policy in Bulgaria isn’t very well developed and she can’t afford to pay for a personal assistant, rent... She was diagnosed with Spinal Muscular Atrophy (SMA), when she was 10 months old. This is a rare genetic neuromuscular disorder, which is characterised by loss of lower motor neurons and progressive muscle wasting. There are four types of SMA, and she has the type two, which is an intermediate form. With this portrait she wants to let the people know that living with SMA is challenging, but it doesn’t mean that you are unhappy. I also write a poem for every project to explain the concept of the story. The poem about Jana entitled: “A life, An exception.” 


 

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