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In a time where social media is receiving some deservedly bad press, there is little talk of the good that can come from it. Catherine Anderson founded a Facebook group for people who, like her, suffered a rare disease. Her work has led to successful global research studies, invitations to speak at conferences and helped improve (and save) the lives of hundreds of women worldwide. This is her story.

It was June 2003. I was just married, my husband and I had recently purchased our first home and life was looking fantastic. We were regular hikers and this weekend was no different as we set off on an easy three-hour walk. As we climbed a hill, I found I was wheezing. It was a little frightening and I felt embarrassed that at 30 years of age and a non-smoker I sounded incredibly unfit.

That day was the first of 18 months of misdiagnosis and persistent searching for what was wrong. Finally, in late 2004, I had an answer.

diagram of where subglottic stenosis occurs in the trachea (airway) – not to be confused with the oesophagus through which food and drink travels down to your stomachDiagram of where subglottic stenosis occurs in the trachea (airway) – not to be confused with the oesophagus through which food and drink travels down to your stomachLike many people when presented with a diagnosis, I jumped onto Doctor Google to find out more. I ploughed through the very limited search results, finding little other than a basic interpretation of the fancy name I had written onto a scrap of paper in the doctor’s surgery: idiopathic ‘we don’t know what causes this’, subglottic ‘the area of the trachea just below the vocal cords’ and stenosis ‘abnormal narrowing’.

I found this disease is very rare, affecting only women, and just two in a million. Finally, I was really ‘special’ but not in a way I wanted. A web of scar tissue had formed across my trachea, leaving me with an airway about the size of a cocktail straw.

It was a lonely few years following my diagnosis, not having anywhere to turn for support or find out whether what I was experiencing was normal. I was having surgery every 6–12 months to dilate the scar, but it kept returning.

I regularly scoured the internet trying to find others like me, eventually joining an online group in the USA but it didn’t offer the support I was looking for. There was no focus on the future, no solutions or shared knowledge furthering learning – just the same old questions again and again. I was even told by the group’s founder that I was doomed to die from this disease unless I was treated in the USA. Not what I wanted to hear.

I became determined to do something different. In 2009 I set up a Facebook group ‘Living with idiopathic subglottic stenosis.’ I learned from my negative experience and set goals for my group. I wanted members to collectively learn and keep the discussion fresh and solution focused, avoiding repetitive questions or revisiting things we knew the answers to. I wrote a guide to iSGS, explaining what we knew (in patient language, not doctor language), sharing it for free and continually updating it as we learned more.

This disease is so rare that many doctors, even those specialising in ear, nose and throat conditions, have little 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.

 Some of the lovely fellow sufferers and doctors I have met around the world through this disease Some of the lovely fellow sufferers and doctors I have met around the world through this diseaseMy 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.

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 particular getting negative feedback. But through careful moderation of the group I have managed to ensure it remains positive and factual, with the guide able to make sure myths and false stories were avoided.

Catherine Anderson presenting at the Cutting Edge Laryngology conference in Edinburgh, Scotland, September 2019Catherine Anderson presenting at the Cutting Edge Laryngology conference in Edinburgh, Scotland, September 2019Group members are fiercely protective of our good culture, and with breathing on our minds a good part of the time, there is a high percentage of active members, with 85% of the now more than 3,800 members returning regularly to read or participate in discussions. A group of doctors from the USA did an independent assessment of the group and published a paper in April 2019. It highlighted the positive nature of discussions and high level of trust in the information provided there – I felt so proud my efforts had been professionally advocated.

One of the most recently published pieces of research I worked on revealed that most women diagnosed with iSGS are university educated. We don’t think this is related to us having too good a time working on our degree courses, rather that those women in lower socio-demographic groups are not being properly diagnosed, and probably still struggling through life with an asthma inhaler that doesn’t work. Our latest group goal is to try and raise awareness at a primary health care level, sharing a flyer entitled ‘Is it really asthma?’ with GP surgeries and encouraging friends and families to do this too. Even if we help diagnose one woman in the world a little bit earlier because of this communication, it will certainly be worth it.

For me, it has been so important to take something back from a disease which is so disempowering. By using my skills as a researcher to help raise awareness and work with the medical community to ensure further learning I hope to be part of the solution.

If you think you or someone you know may have been misdiagnosed, please talk to your GP about getting a referral to an otolaryngologist for further investigation.
If you happen to be or know anyone suffering with airway stenosis, please direct them to the group for support: www.facebook.com/groups/idiopathicsubglotticstenosis.

 

Article extracted from Freemason magazine, March 2020, pages 24 to 26.

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