Saturday, 16 May 2015
This week is PWSA UK Awareness Week. The Prader-Willi Syndrome Association UK want to spread the word about the rare chromosome disorder. They want more people to know about the syndrome, in an effort to allow children and adults with PWS to be understood and accepted, and to make more people across the country aware of what the condition means for PWS people and their families, friends, and carers.
The appointments. Oh, the appointments. It used to be filofax companies, but now it’s Smartphone calendar app makers that we keep in business.
There’s the district nurse, and the consultant paediatrician, and the physiotherapist, and the geneticist, and the endochrinologist, and back to the consultant, and the height/weight nurse, and the orthotics specialist, and the Portage nurse, and the consultant again, and the A & E doctor, and the Special Needs Education Co-Ordinator, and the educational pyschologist, and the dietician, and the master plaster caster, and the surgeon, and the ortho chap, and the physio again, and the dentist, and the teacher, and the teaching assistant, and the consultant, and the endo, and the physio, and the SENCO, and the foot woman, and the back guy, and the substitute consultant that hasn’t got a clue, and the GP who’s ‘in charge’ of all the notes but who you never actually see because you see the specialists, and the consultant, and the research student, and the social worker, and the orthodontist, and the endo, and the transition person, and the consultant, and the whatdoyoucallher and the whatshisname and the rest of them, and there’s no rest from them, and you just want to tickle along and not feel like you need your own private bleedin’ parking space in the hospital, and it’s always on a work day, and you’ve never got the right change, and sod’s law you’re back again the next day to the same place, but then it’s a different hospital, and then they’ve lost your notes, and then you feel like standing in the corridor and yelling: "ENOUGH!"
These are the appointments you have when you have a Prader-Willi person.
They come in batches at different ages, and you do get to have a bit of a break, and then you get to have a bit of a spate.
Somehow you fit the rest of life around them.
The appointments. Oh, the appointments.
Song is Etta James - In My Diary