I’m a person that really likes looking forward and is usually pretty focused on what will be the ‘next step.’ I don’t quite have a concrete 5 year plan that’s engraved in to stone but I like to have a couple of things to work towards. I guess I generally quite like to feel a sense of progression both personally and professionally. Although I understand that we can’t all be as lucky as Mystic Meg with her crystal ball, having big question marks over large elements of the future is really quite unsettling.
Why don’t I have all of the answers?
I’ve already acknowledged that I’m not Mystic Meg, but I should also say that I’m well aware that everyone is different and each individual experiences life in very different and unique ways. It’s not that I want to know whether or not I’ll finally like the taste of porridge in 5 years time or whether I’ll have a certain type of job. Instead, I’d like to have an idea of how things might pan out for me health-wise.
I’d love to know whether it’s likely that I’ll be able to hold down my well-loved job in the next 5-10 years. I’m more than a little bit curious as to whether I need to start thinking about the reality of losing my voice or whether I’m just over-worrying and can relax about that for the next couple of years. Essentially, I want to know what my quality of life might look like as a general, ballpark. Of course, I don’t expect predictions with 100% certainty but I’d love to get a sense of the general pattern of events experienced by people with tracheomalacia. Why? Because I like being prepared so that I can start to get my head around things.
I don’t have the answers to these questions mainly because not even the medical professionals know.
Subglottic tracheomalacia isn’t something that has cropped up in the scientific literature, it’s not really been identified on many hospital wards or been widely talked about in clinics. This is partly because it’s quite rare, but also, it hasn’t long been identified. It’s only something that has started to be diagnosed over the last decade, in a small subset of patients.
This has a couple of implications, mainly because it affects a relatively small group of people, there’s not much data being collected about it yet. Thankfully, this is about to change as they’re launching a national (UK) based database of people with tracheomalacia. This is an incredibly positive step because:
- we can start measuring people over periods of time
- we can see how people with tracheomalacia respond generally as a population, not just as individuals
- a national database is a national resource to be fed in to the academic literature
- it’ll also help raise awareness of this ‘group of people’ and hopefully, in turn, the condition
- it allows researchers to share, access and develop a knowledge base
Let’s hope this makes it easier to answer questions in future! For now, I’ll have to learn to embrace the unknown and uncertainty to focus on what I can control.
If you find yourself thinking “What the hell is tracheomalacia?” – give my first post a read!
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