For 33 years I have not been able to wash my own hair, I have always relied on someone else to come into my own space, sometime with no dignity left. All this has changed with a simple parcel being sent from the USA. And had it not been for Boston and attending the conference for my syndrome and meeting others with the same struggles as me, I may have been none the wiser for the rest of my life!! This morning I WASHED MY OWN HAIR YALL!!!!! One of the many best days of my life when I gain some more independence and dignity back!!