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Paula's Message for Healthcare Professionals

In a recent article in the Archives of Disease in Childhood (ADC), Paula shared her experiences of growing up with Fragile X Syndrome. The ADC is a peer-reviewed medical journal published by the British Medical Journal Group and covering the field of paediatrics. It is the official journal of the Royal College of Paediatrics and Child Health and therefore is read by a vast number of medical professionals across the UK, and beyond. Therefore, it is a wonderful opportunity to raise awareness of Fragile X Syndrome. The article is part of a section called 'Patient Voices' which gives young people a much-needed to share their experience of their condition and accessing healthcare.

In the article Paula shares some of her experiences of accessing healthcare through her life, including things that were helpful and things that could have helped. Included below are Paula's take home messages for people reading the article.

What do Healthcare Professionals need to know?

  • Healthcare professionals need to be more aware of Fragile X syndrome.

  • Supporting healthcare professionals need more training in disabilities.

  • All health professionals need to be more understanding of people with invisible disabilities.

  • Patients with disabilities should be allocated more time in their appointments.

  • Reasonable adjustments should be made in every appointment.

You can access the full-text of Paula's article, via this special link which the publishers have kindly shared to allow the Fragile X community to access the article for free:

Thank you Paula for sharing your story, as well as to Dr Robert Scott-Jupp and the team from ADC for publishing this article.


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