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Jeans for Genes Day 2014

Today, Friday 19th September 2014, is Jeans for Genes day. Jeans for Genes is an annual fundraiser for Genetic Disorders UK to change the world for those living with genetic disorders. People pay to wear jeans at school or work…

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Turning 21 – The Journey into Adulthood

Sunday 14th September 2014 - It’s my 21st birthday on the 2nd October, and I am truly grateful I am here to reach this milestone. Every birthday is a milestone for us, but turning 21 is a huge one. For someone…

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Personal Health Budgets

6th September 2014I recently transitioned over to a Personal Health Budget from Social Services Direct Payments and we are still sorting out the funds and what I need as my needs are increasing greatly year on year. Direct Payments worked…

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Overcoming Obstacles

It is hard to overcome an illness when it imposes so many limitations and treatments/problems demand such a lot of time throughout the day (and night). Some days it seems impossible. I’ve been ill for six years and eight months…

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HANs week, tube feeding, TPN and awareness

This week is home artificial nutrition (HANs) week. I have been kept alive by artificial nutrition for 5 years. Initially, it was through enteral nutrition, where a special milk is delivered into the stomach or small bowel via a tube,…

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