knowledge of it, meaning patients have to self-advocate to ensure they get the right treatment. I ensured everything I wrote in the guide was approved by the most experienced doctors treating this disease, so patients read and share the most accurate information. My career has been in the field of market research, and I could not resist the chance to conduct a survey amongst patients once I had a critical mass in the group. I wrote up the results and distributed them to doctors around the world, using a database I had built up from reading medical papers and hunting down doctors’ email addresses. This was what really gained attention from the world’s medical fraternity – a group of doctors from Mayo Clinic in the USA contacted me and asked whether they could rewrite my report into a medical paper. I agreed, and it was published in one of the main journals for ear, nose and throat (ENT) specialists worldwide. As my support group grew, so did the knowledge base, and doctors treating iSGS around the world adopted me as a source to share their published papers, which I then distributed via the group. The more we learned, the more I added to the guide, which is now shared by doctors worldwide not only with patients, but also with interns and registrars in the ENT medical field. The past three years have offered opportunities for me to help raise awareness at conferences. I’ve represented patients by presenting in Chicago, Atlanta, Brisbane and Edinburgh with my next appointment at a European laryngology conference in Vienna, Austria. The chance to meet and network with these doctors (who in the group are often seen as celebrities, those who help us breathe again!) face-to-face has been invaluable, allowing us to share insights and then back with the group, always increasing our field of knowledge.
Vocal Cord Trachea Oesophagus Stenosis
My journey to provide patient support and raise awareness of iSGS has not been without its challenges. Initially, many doctors resisted patients learning and sharing information via social media, with Facebook in
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