Research and Surveys

Media interest in survey results

A number of articles reporting on the survey results have appeared this morning following recent press release.

The coverage reports that:

  • Despite 48% of patients with Gorlin Syndrome having to endure more than 20 operations to manage their condition, “just 15% said they had been offered counselling to help them cope with their diagnosis”
  • 51% of sufferers need surgery every few months, with 49% saying this had an emotional impact on them
  • The majority of the articles include Margaret Costello's statement from the press release, highlighting that “quality of life is a real issue for people with this disease” and that “while emotional wellbeing is a core part of cancer care elsewhere, it is being unfairly overlooked in this group of people and must be addressed”

To date the Scottish Press have really picked up on the story with articles in 14 newspaper publications.  Margaret Costello and Rebeccas Mulligan (patient in Scotland) have also been interviewed by Real Radio Glasgow, and Sally Webster, Margaret Costello and Helen Costello (all Trustees) have been interviewed by the Manchester Evening News.  It is anticipated that there will be additional media opportunities in the coming days.

Included here are links to two articles The Herald Scotland and and on-line HealthMatters.  Additionally view an article at Nursing Times and Medicine News Today.

 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
Gorlin Syndrome community on HealthUnlocked
website security