May for us has always been a month to promote awareness around Mucopolysaccharidosis (also known as MPS. I imagine because it’s pretty tricky to pronounce Mucopolysaccharidosis!)MPS Awareness Day is May the 15th. For years, I have tried to make it a ‘known’ […]
My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.
I am already shaking. The clock strikes 10 and I spot his car. I quietly leave. I don’t want the chorus from my boys . I introduce myself and tell him I am nervous. (I am very nervous). He smiles. We begin. […]
Raising awareness for Hunter Syndrome (MPS type 2) is always something I am happy to do. Raising awareness costs people nothing but time, sadly time isn’t something many of those living with MPS have. I was asked to write a little piece […]
If you are a parent reading this, or an aunt, uncle, grandparent, cousin, sibling, friend, school teacher, a GP, a nurse, a doctor or even a pediatrician I want you all to come with me on this imaginary trip. It’s not a […]
In 2015 our family had no idea that May 15th was MPS Awareness Day. We were lucky. Most people have never heard of MPS (mucopolysaccharidosis). Why would they? It is not the rarest of diseases, but rare enough to be described […]
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Tagged grief, Huntersyndrome, mpsawareness, rare