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Category Archives: Patients’ tales
Protected: Woman with aniridia is first to get new corneal stem cell transplant in UK
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Posted in Medical staff talking, Patients' tales, Research
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Protected: Life with aniridia by Ben and Lois
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Melatonin and sleep
Katie has recorded some points about melatonin, a supplement which some people with aniridia and other conditions use to aid their sleep. [gigya src=”http://boos.audioboo.fm/swf/fullsize_player.swf” flashvars=”mp3=http%3A%2F%2Faudioboo.fm%2Fboos%2F1238887-vipadvisor-melatonin.mp3%3Fsource%3Dwordpress&mp3Author=katkin100&mp3LinkURL=http%3A%2F%2Faudioboo.fm%2Fboos%2F1238887-vipadvisor-melatonin&mp3Time=04.25pm+28+Feb+2013&mp3Title=VIPAdvisor%3A+Melatonin” width=”400″ height=”160″ allowFullScreen=”true” wmode=”transparent”] Note: Katie referred to the pituitary gland when she meant the … Continue reading
Dear David Cameron: What life is really like with aniridia and on benefits
Today government plans for the biggest shake-up of the welfare system for decades come in to force. Hundreds of thousands of households across the UK will be affected by the changes to benefits. An article in the Mirror last autumn featured … Continue reading
Protected: Jenny’s career – Part 4: Preparing for work
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Posted in Patients' tales
Tagged Access To Work, benefits, career, guide dog, mobility
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Claire in the Chronicle
To promote the North East England aniridia meet-up in February that I organised, I got myself interviewed by the local newspaper. Here is a scan of the article. Click on the image to view it full size and then zoom … Continue reading
Personal recordings for Rare Disease Day
To celebrate Rare Disease Day we encouraged people to each answer 5 questions about their rare condition and how they feel about it: Which rare disease do you/your family member/friend have? How does it affect you and/or them? Have you met other … Continue reading
Meet-up in Newcastle 24 February 2013
People in North East England affected by aniridia came together in on Sunday 24 February for lunch and chat and fun. The lunchtime meet-up was in Zizzi in Metrocentre, Newcastle Partners, family and friends of people affected by aniridia were all … Continue reading
Posted in Aniridia Network news, Parents' accounts, Patients' tales
Tagged meeting, meetup
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Going to a work place party 2
After the success of last years’ staff social, the senior management team at my workplace decided they would hold another event this year. It was planned to be held in the same place, in a local hotel. Tickets were free … Continue reading
Watching TV
Recently a parent put the photograph below on Facebook and asked “Does anyone with or child with aniridia sit this close to the TV to watch it?” There was a great set of responses, from all over the world, which … Continue reading
