If someone you know and love has recently been diagnosed with MPS or has been living with it for some time, you may well have been there through the various stages of shock, grief and fear for the future; as well as the practical side of regular check-ups, hospital visits, invasive treatments and complications. 

You may have experienced your own feelings of helplessness; wishing you could do more, and that you could change the situation for them.

The truth is, whatever you are doing to support your loved ones is important and invaluable.  Most people living with MPS say their family and friends are the ones who have got them through the tough times.  Just being there to listen, offer babysitting for siblings, cook meals, share in the good days and the bad days are all things that can mean so much.

More information

  • Talk to us if you need advice about how to support your family or friend who is living with MPS or if you need support yourself.  We can direct you to support services and resources.