Adult Patient Meeting 2014

The weekend is over and we had our 4th annual DBA UK Adult Patient Meeting in London over the weekend, held at the Premier Inn London Victoria.

The meeting went very well, with a total of 13 adult patients present as well as 3 medical professionals delivering talks and answering questions.

We had the following professionals present –

  • Dr Josu De La Fuente, the key DBA specialist for the UK.
  • Yvonne Harrington, his support nurse from St Mary’s.
  • Dr Farukh Shah, a senior chelation expert.

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Dr Shah spoke first on the Saturday about the importance of Iron Chelation as well as the different medicines and methods used. Also she spoke about the different scans a DBA patient should be having. She also gave us an insight to the future of Exjade, explaining that a film coated tablet and ‘sprinkles’ version are in the works, due for release to everyone in 2016. You can see a version of her presentation by clicking here. (Please note any presentations as given ‘as is’ without the explanation of the expert from the talk)

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Then Yvonne Harrington gave the group an overview of DBA and it’s associated complications, very useful for the new adult patients in attendance. You can see a version of her presentation by clicking here. (Please note any presentations as given ‘as is’ without the explanation of the expert from the talk)

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Finally for the Saturday morning, Dr De La Fuente rounded off the medical section with an explanation about gene sequencing, but went on to say the main focus of your DBA care should be on your day to day well-being.

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During the open forum section, the adult patients discussed employment law, regarding when do you mention DBA to a potential employer and it’s pitfalls. This can be an area for the committee to investigate further with a view to having an expert speak at a future meeting. Also discussed was trying to find supplements which do not contain iron.

We also had a nice hearty meal on Saturday evening as a group and the opportunity to share stories and get to know each other better too.

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Hayley Teasdale, the adult patient liaison on the committee expresses her thanks to all those who attended and hopes even more of the adult DBA patients can join us in the future so the event can grow and grow.

If you would like to attend a future adult patient meeting, please contact Hayley Teasdale at hayley.teasdale@diamondblackfan.org.uk

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