25-27 September: Mrs A – making a difference

Author: The very lucky Mr A

Location: Edinburgh, Scotland, UK

As I write this blog the lovely Mrs A is standing in front of a room full of super smart top surgeons and other health professionals from around the world at the “Cutting Edge Laryngology” conference in Edinburgh this week, presenting on how the rare disease she suffers from (idiopathic subglottic stenosis) has impacted her life, and how she has fought back.

For those unfamiliar with her story, she was diagnosed 15 years ago with this disease, and that was after several years of misdiagnosis. Being a researcher (a geek she bashfully says with that lovely smile) she turned to the internet for answers on how the disease is triggered (what had she done “wrong” to deserve it?), what treatment works and how to access it, and how to manage your life in the interim. There was almost nothing out there at the time, so in October 2009 she created a Facebook support group to see if she could connect with other people struggling with the same dearth of information.

Well after a slow burn, almost a decade later the group is now approaching 3,700 strong, thanks to endless hours of her nurturing and managing it and providing 24×7 support to fellow suffers around the world. Those who want and need to reach out and chat with others who are equally mystified, scared and often depressed about the lifestyle and health implications of having this life threatening and lifestyle inhibiting disease. In addition the group helps enable research into causes and treatments sponsored by medical universities, again something Catherine has driven and managed.

Idiopathic subglottic stenosis restricts the airway through scarring that builds up in the trachea (with no known cause) and creates difficulty in breathing. Sufferers just cant get enough air through their airway to function. The severity of their symptoms is dependent on how narrow the airway becomes, ranging from an irritating shortage of breath, to a blockage resulting in death. The rare disease affects 98% women – two in a million.

What I want to underline though is the how the glass is always half full for some people, and Catherine is the perfect example of that. She could have sat back and accepted she was a “victim” of this disease, given up exercising, given up trying to find out what causes it. But she didn’t, and I think it’s an inspiring story for others.

When we are out and about on our wanderings around the world she seeks to connect face to face with the people she has got to know online. I’ve been at a number of these meetings over the years, and I can tell you I have heard them say thank you for everything from saving their lives, to saving their sanity. We’ve had some amazing experiences as a result of connecting with these people, and I guess that’s one big reinforcement for me that if you give of yourself, as Catherine has, you are rewarded in so many unpredictable ways. I think the most valuable for her is the sense of contribution that she is making. Most studies on happiness will point to a key driver for people who describe themselves as experiencing that elusive state of happiness as having a network of relationships in a community (work family or other) that value that contribution. That’s what she has created though her voluntary work, and its a credit to her.

The upsides of creating this group just keep rolling in, none of them looked for at the beginning, and none drive her now. For instance, we have met so many members of her group now in different countries. In Australia, New Zealand, the UK, in the US, Netherlands, Germany and Austria, all who have been so welcoming of us and help make our travel time in their country so much more enriched with local knowledge. We’ve made new friends and had an insight into lives across the world we never would have had otherwise.

Also the medical community that she has got to know have also been truly inspiring for her. They work so hard to help their patients, with often little feedback on when they succeed. She’s met some fantastic people this way as well, and all the emotionally richer for it.

I attended one of the social functions of the conference earlier in the week and watched Catherine working the room, talking to these medical experts, building her network, and ensuring that she is in the best possible position to continue to get their support when she needs it, to help out one or all of her group. She was awesome.

Illness rarely has an upside (or does it?), but she has made one in this case. I’ve watched her develop new skills, and leverage, deepen and broaden her existing ones.

So that’s really want I want to say, that Catherine is a model for me of the potential “up side” of being unfortunate enough to suffer from an illness and I am constantly learning from her how to be more positive when life sends its little curve balls. Also that social media is a tool, to be used like any tool – to help or hurt.

Thank you to everyone who supports her in this voluntary work, whether by words of encouragement on the Facebook group, or friends who give her a nod to the time, dedication and perseverance it has taken. Give her a big round please.