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Mother's Assembly disease campaign

2.9 from 8 votes
Thursday, March 31, 2011

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A CROSS Hands mum has been campaigning at the Welsh Assembly to raise awareness of a rare disease.

Marie James, whose 24-year-old son Trystan suffers from Tuberous Sclerosis Complex has been highlighting his plight and those of people like him.

TSC causes tumours to grow in major organs and can lead to epilepsy, learning difficulties, and other serious health problems.

At a reception in Cardiff Bay, organised as part of international Rare Disease Day, Marie emphasised the need for good quality care, treatment and support for people with rare diseases like TSC who often face delays in diagnosis, lack of adequate healthcare and information.

"There are over 6,000 rare diseases affecting around 175,000 people in Wales and 3.5 million people across the UK," she said.

"Collectively, rare diseases are not rare and yet there is still no coherent strategy in Wales for managing the care of people like my son Trystan."

As well as coping with the daily demands of caring for Trystan who has epilepsy, autism and severe learning difficulties caused by tumours in his brain, as well as heart and kidney problems, Marie and her husband Perry, have been Welsh organisers for the Tuberous Sclerosis Association (TSA) for 18 years.

 

© Copyright 2001-2011

Source: The South Wales Guardian
2.9 from 8 votes
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