My name is Zak Hughes and I have x-linked myotubular myopathy and am 22 years old.
In spite of many respiratory and swallowing problems throughout my life, I have managed to maintain oral eating and non-invasive ventilation. I was also able to achieve walking, but lost that ability when I was 14 and developed scoliosis – I have since been in a wheelchair full-time. I feel that I have learnt better to manage my condition, finding that preventative daily airways clearance, good nutrition and regular exercise really helps.
I employ a team of personal assistants (carers) who are employed under the new NHS Personal Health Budget to enable me to live as independently as possible in my adulthood. They are more like friends and help me with all aspects of my daily life, including my personal care, airways management, moving and transfers and accessing hobbies and interests.
Although I do not have paid work, I enjoy designing logos and writing gaming blogs for Birmingham University Student Magazine. I also volunteer to give my patient experiences for the NHS to help them better understand my condition.