6th May 2015

Zulma’s story – access to information and support

2020 MS Connections
Every evening at 6pm Zulma leaves her home in the industrial city of Lanús in Argentina to travel to work. A nurse at the local hospital, she works 12-hour overnight shifts, often not getting home till 10am the following morning.

For many years Zulma has lived with her son Juan Manuel, who is now 38. But their lives changed when Juan Manuel was diagnosed with MS. He was just 32.

For three years after the diagnosis, Zulma and Juan Manuel struggled to cope. Juan lost his job due to his MS, which meant he also lost his healthcare. He had no access to treatment, and no help other than his mother. Despite being a nurse, Zulma didn’t understand MS or know how she could help her son.

Juan used a wheelchair and struggled to get out of the house. He often fell and, with his mother working overnight shifts, would have to wait for help until she returned in the morning. Zulma said: “It was very sad because he fell a lot of times. There was nobody who would help him if he was injured.”

The turning point came when Juan Manuel had an especially bad fall, cutting his head open and needing stitches. That was when Zulma decided to look for help. She searched online, and soon found out about Esclerosis Múltiple Argentina (EMA), who aim to improve the quality of life for people with MS and their families. She contacted EMA for help.

EMA visited Zulma and Juan Manuel at home in order to get to know them and assess their needs. Thanks to the help and advice from EMA Zulma was able to include Juan Manuel on her health insurance. They advised her to write to his doctor asking for rehabilitation, psychotherapy and care at home.

Juan Manuel speaking to the team at EMA
Juan Manuel speaking to the team at EMA

Thanks to EMA, Juan Manuel now has a carer who comes every day, as well as regular home-based physiotherapy and psychotherapy sessions, and access to phone support. Zulma lives without the fear of what will happen when she is not at home, while Juan Manuel is more confident and self-reliant.

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