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Collecting data on sufferers of myasthenia gravis

Posted on Tuesday, 20 August 2013

On Sunday 16th June, Dr Stefan Blum and Dr David Lee generously gave of their time to present to the Association members the results of the past months’ work in analysing the survey data. Dr Lee had devoted his holiday break to the task and Dr Blum did the presentation, afterwards fielding many questions. His presentation focused on several demographics and two key issues in particular. The details of this are best watched when all current financial Category ‘A’ members are forwarded the DVD of the presentation. Most humbling was the comment from Dr Blum, that the results highlighted to-date will affect his understanding of the condition and his recommendations for patient management. Medical Journal Articles will be prepared over the coming months and will hopefully be published by Christmas. Several projects for further research have been discussed.

During the event, a few members said they had chosen not to complete their survey as they felt their story was not of significance or the diagnosis was too recent to be valuable. Dr Blum was quick to reassure them that this is not the case. All stories and contact with sufferers is wanted. Please call if you need a replacement copy of your survey. Thank you again to everyone for being so supportive. The story of the survey continues, with more information and benefit set to follow.