I know, I know. It seems like almost every week there is another awareness day, another cause tugging at your heart- and purse-strings.
MPS Awareness Day is on the 15th May and I wanted to say a little about why it’s important to me. Obviously MPS is something I think about every day since I first heard about it a year ago, but why do I want to shout about it so much?
I’m not really pushing fundraising this time, as I strong-armed so many of you into supporting my efforts in November. However if you’re feeling flush you can donate here. The MPS Society support families dealing with MPS in many ways. Grants are also made to research projects that look for new treatments and potential cures such as gene therapy. Vitally important even for us as the clinical trial Pudding is currently on is by no means an ideal solution.
Another aim for awareness days is to spread more understanding about a condition. I’ve read some fantastic pieces educating readers about autism or the difficulties of living with an undiagnosed child, and know that these have the power to change the way I view random encounters.
But for me, the reason I blog and the reason I am shouting about MPS on 15th May is simple. I’ve written on ‘It’s Me Ethan’ about how lucky we were to get Pudding diagnosed when he was. Many MPS families struggle for years to get answers for their child’s problems. If by our efforts to raise awareness we can help even one family find a diagnosis sooner then I will be happy.
So please, if you can, share a post about MPS over the next few days – I don’t mind whether it’s one of mine or another – and ask your friends to as well. Maybe you don’t know anyone with similar symptoms. Maybe your friends don’t. But maybe somewhere a friend of a friend is worrying about their child’s development, sitting in yet another hearing appointment, phoning a speech and language therapist, thinking about their child’s distinctive facial features or wondering why trousers never fit round his big tummy. Maybe they will see a post about MPS and the penny will drop. Or maybe you know a health visitor, or nurse, or GP who regularly see children and could pick up on this rare condition.
Early diagnosis means that those MPS conditions with existing treatments can start to be treated straight away before too much damage is done. It means that when clinical trials become available, families can have the chance to take part before the disease progresses too far. It can really make a difference.
You can make a difference.