Look at any charity/ not for profit organisation related to health and the term “awareness” will be there in what they do.
Creating awareness is the mission because, with it , all the rest can follow and be achieved.
Soon it will be the fifth aHUS Awareness Day.
Surely , all, who need to be aware of aHUS , will really know all about it by now.
Well perhaps not those who on 24 September 2019 .and who have yet to be ill from aHUS. They will only be interested when it hits them and once they have grasped the name of what has hit them they will find massive amounts of information available about aHUS.
The internet let’s them become much more aware, after the diagnosis firstly made them aware.
Let’s face it, in the past four decades the amount of information about aHUS has snowballed. OK some of it is historic , dated and superseded by new findings , but there is so much to read, watch and listen to. Just enter “aHUS” in google. Do that and they can even become aware of “air handling units” and a little town in the south-east of Sweden.
There is even lots of information about the specific aHUS they have, within an aHUS spectrum that we all know about.
They will likely hear “TMA” mentioned ,even if the term “thrombotic microangiopathy” does not register. They will hear “ eculizumab ”and join the rest of us in mispronouncing it – “eh cue LEES ewe mab”.
They might also become more aware of dialysis. Though they will most likely have known about dialysis already , something which happens to other people.
They will be shocked to hear how rare aHUS is and become aware of rare diseases, they are now one of that number something that they never thought they were.
Surprised as well to find that they are one of around 20,000 surviving with aHUS out of the world’s 7.5 billion population.
The information is all there to be as much aware of aHUS as they wish to be.
Once they become aware of how eculizumab had worked for them, by controlling their Complement, which would be something they also could become aware of ; they might become aware of their need for a Complement inhibitor.
In fact they may even be in world that is only aware of ravulizumab and be grateful it is easier to pronounce. They will also become aware of how soon ,if ever , will they be able to withdraw from ravulizumab treatment without ill effect.
They may even be aware it is affordable.
By then an aHUS awareness day may not be needed.
Is it now?
