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Page last updated at 11:52 GMT, Monday, 10 August 2009 12:52 UK
Living a life with Lowe Syndrome
By Paul James

Paul James with his mother
Paul James out and about in Consett with his mother

My name is Paul James, I am 26-years-old and I have Lowe Syndrome. I live in Consett with my parents.

Lowe Syndrome is a very rare syndrome that affects the kidneys and eyes.

I have got a learning disability as Lowe Syndrome also affects the brain. The syndrome only affects males.

I don't let my disability affect me and have just been successful in getting a job to be a facilitator for The Learning Disability Parliament.

I represent the parliament at conferences, the local partnership board and any other meetings where I am needed to attend.

The parliament gives people with disabilities a chance to have their say in what is happening in their area.

I manage an individual budget which lets me employ a PA (personal assistant) who helps me socialise.

This helps me a lot as I no longer need to depend on my parents as much to take me to places.

It lets me live a life just like any other person my age. I like horse racing, pub quizzes, visiting pubs and shopping.

Paul James
Paul writing this article for BBC Wear on his computer

Lowe Syndrome Trust

The Lowe Syndrome Trust, which looks in to medical research for Lowe syndrome, was set up in 2000 by Lorraine and Andrew Thomas as their son Oscar was born with Lowe syndrome.

This charity relies on public donations as they receive no government funding.

I organised an event which was very successful and raised over £1,500 for the trust.

I have enjoyed all the work that I have done and always look for new opportunities to work and learn.

For more information about the The Lowe Syndrome Trust visit their official website:





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