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.

Aware?

May 15th – MPS Awareness Day

I did intend to plan something this year. Something to raise money and get noticed. Make some noise and increase people’s awareness of mucopolysaccharidosis. It’s not really in my nature to draw attention to myself, even so I felt it was something that I should do.

But I haven’t planned anything at all.

To be honest, the last couple of months I’ve wanted to stick my head in the sand and pretend that MPS just doesn’t exist. But of course, my son doesn’t have that luxury. The effects that MPS has had on his brain stop him from knowing what it is doing to him. But I am very aware.

I am aware that his breathing is louder than it was, and he needs to rest more often again.

I am aware that many of his hard-won skills, such as pointing to head, toes or eyes, have faded away.

I am aware that he hasn’t grown in the last six months and is now on the 9th centile for his age (up until he was four he was on or above the 75th centile).

I am aware that he has lost most of the words that he was using.

I am aware that the treatments that should be stopping all this from happening are prevented from doing so by his own amazing immune system.

And most of all I’m aware of what all that MEANS. It means that unless something else can be done we are watching our vital, happy little boy die very slowly in front of our eyes.

Since we moved to our new house six months ago, the practicalities of our situation have been a lot easier to deal with, but emotionally the reality of MPS does hit me hard at times. So although I haven’t planned any awareness events, what I can do – what I have always done – is write.

I write about our experience so that others can learn about MPS; so newly diagnosed families can feel a little less alone. I write to save my sanity and hope that I spread awareness that way.

All the current research points to the fact that the earlier MPS is diagnosed the better; the few existing treatments (and new ones coming through) are much more effective early on while the body is still developing and before too much damage is done. So, please, for Pudding’s sake this MPS Awareness Day wear blue, share a post or two, donate if you can, and spread the word.

I’ll be wearing my blue wig and MPS T-shirt all day, and spreading awareness where I can. Who’ll be joining me?

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