Why MPS Awareness now?

A couple of days ago I wrote on Twitter that it felt strange shouting about MPS Awareness Week at a time like this. After all, why should anyone care about a rare condition that no-one has ever heard of, when they’ve all got their own worries at the moment?

But the more I think about it, the more relevant it does seem.

I suppose it also follows on from my last post – Trapped – that I’d completely forgotten about until coming on here just now. (Unsurprising. It was written a whole two months ago.)

Covid-19 has brought the whole world to a standstill. Normal life no longer seems real.  People are worried about the future, worrying about whether they can still work. Dealing with stomach-churning anxiety when doing the simplest of tasks. Stuck indoors and isolated from everyone else. We clap the NHS every week.

Welcome to the world of an MPS parent.

IMG_20170109_180120Listening to the emotions that many are going through during lockdown brings back memories of the time we were first told that Pudding had MPSII (Hunter Syndrome). It was a bombshell, rocking our world. All plans went out the window. I felt like I was stuck on a rollercoaster, my heart constantly lodged in my throat and life became more about hospitals and than school sports days, and NHS staff became my heroes. As time went by, Pudding’s behaviour often made it easier to stay at home away from other families who would point and make rude comments. Isolation among MPS families (as with others dealing with disability) is common.

But the analogy doesn’t hold up for long.

Covid-19 is a horrible virus, that spreads easily and has caused many deaths. But we will see an end to the chaos eventually. Scientists are working flat-out on vaccines and treatments. And until then, unless you are in one of the vulnerable groups (which include many people with MPS) there is a good chance that you will pull through.

Some types of MPS do have better treatments right now. But particularly for those with progressive MPS 2 or 3, once the crisis of Covid-19 is over, the future still doesn’t look bright. Once we have been handed that diagnosis we know what the future will bring, and it is not one that any parent wants to hear.

I don’t mean to underplay this trauma that everyone is going through right now – after all, we’re going through it too. But I hope it explains why I will still shout louder about MPS awareness at this time.

Please join me on Twitter or Facebook on the 15th May in wearing blue (or purple internationally) – we’d love to see your pictures.

6 thoughts on “Why MPS Awareness now?

  1. There are many ways the current lockdown situation is familiar to us SEN parents and I think it is important to highlight that as people learn so much more when they can connect on some level. It is always worth raising awareness.

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    1. huntersmum

      Thank you. And I know I’ve concentrated more on the similarities for MPS parents, but it is definitely on my mind too that these are shared by other SEND families and people with disabilities.

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  2. kevin willetts

    Just when you think things can’t get worse, along comes Covid 19. As a grandparent of a most beautiful MPS2 boy, I fear of how long it will now be before, I can hold him in my arms again. His disability dictates that only his mother and sister are allowed contact. He has not been allowed his treatment and his health is deteriorating. Prior to this tragic pandemic, life was very hard for our family but our loving unit was solid and had the ability to overcome obstacles as they arose. Today we are fractured and have less of an idea how our lives will build for any future we may have left with our gorgeous grandson.

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  3. I think there are so many parallels between our normal situation and this – I used to feel so isolated and it was easier just to stay inside and away from others. Great post Sally x

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