With generous support and kind help from Dr Simon Travis, a member of our medical panel, CGD was highlighted at the recent European Crohn’s and Colitis Organisation (ECCO) conference in Prague. This conference is the fourth largest meeting in the world concentrating on Crohn’s and Colitis and it was a great coup for the Trust to raise awareness of CGD among gastroenterologists from around the world.
With Simon’s support as President Elect of ECCO, Dr Edward Loftus, Professor of Medicine on Inflammatory Bowel Disease at the Mayo Clinic in Rochester, U.S.A. was invited to speak about CGD, its diagnosis and hallmark symptoms and CGD associated inflammatory bowel complications and treatments.
‘CGD can be sometimes be misdiagnosed as Crohn’s Disease and gastrointestinal involvement is a common problem in CGD. I felt it really important to help highlight CGD in the GI community and the delegates at the ECCO meeting were an ideal target audience to reach. I was delighted that Dr Loftus accepted my invitation to present on CGD’, said Dr Travis.
Dr Loftus, takes up the story ‘There is little known about how common CGD is in people presenting with symptoms of Crohn’s disease. It is probably uncommon however we know that people with CGD do slip through the net and are put on the wrong medication. So it is really important that gastroenterologists are aware of CGD and review case histories of the patient and family carefully.’
During his 30-minute presentation Dr Loftus highlighted that for gastroenterologists there should be a higher-level suspicion of CGD in younger patients with symptoms of Crohn’s and in those patients with a history of recurrent infections. ‘We are also gaining new knowledge of the features that define CGD from Crohn’s disease from looking at the different cell types that are found in gut biopsy samples. These studies should help develop some screening systems so that CGD can be picked up early’, added Dr Loftus.
In addition to arranging a speaker on CGD, Dr Travis, through the ECCO committee, also gave free exhibition space at the conference for CGDRT to highlight its work. Susan, our Medical Research Officer was there to fly the CGDRT flag. ‘This was a fantastic opportunity for the Trust to raise awareness of CGD and CGDRT. It was a pleasure meeting Dr Loftus and discussing CGD and the work of the Trust. The conference auditorium was huge and it was really marvellous to see so many people hearing and learning about CGD at one time. It was invaluable. So many thanks to Dr Travis and Dr Loftus for helping us and doing a great job for CGDRT’.
So what was the feedback from the session – Dr Loftus comments ‘The talk did raise awareness in this group of physicians -- I had several people who attended the talk come up to me later who said they hadn't quite appreciated the existence of CGD. In addition to helping improve diagnosis of CGD my presentation will hopefully help encourage clinicians to publish their findings and stimulate much needed further research into treatments for inflammatory complications in CGD.’
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
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Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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