interview with stakeholder (best friend of sufferer) 29.11.09

sandra | diagnosed with Rheumatoid Arthritis at age of 9 (juvenile?), now is 25
(used fake name here on blog)

- young.. aware of what's happening in the world in terms of science and research so sees a correlation with ways to decrease symptoms and pain.

- at 22, started a new treatment 'anti TNF' (antibodies against inflamatory..) so feels much better but still had deformed hands and feet.

- but recently underwent surgery to fix that. and what able to run for the first time! and wear new shoes that looked normal.
did the operation privately (save up for it) to have it done between her law degree and her new job (see below). She did not want to wait years for the NHS and the time factor was important. also because her mom (teacher) would be off of work.

- after the surgery. she started talking about her arthritis and was more open about it (more comfortable, and feels better..)

- she remembers that when they were young and went touring in Italy to sing, her friends symptoms of pain would be worse.

- loves music, singing, playing the piano. she adapts the music to her fingers, because she can't reach an octave.
[special piano with special keys?]

- says that she can't do open windows on a damp night

- always had to be careful about weight and diet.. because she can't move for excercise..
no diet seemed to work! according to hannah (the girl i interviewed), at one point her diet was eating rice and maltesers only! :s

- she is not week, but feels embarassed.
wants to feel like she can do it all on her own. "i can carry my bag!"
doesn't like it when people baby her
but hannah now no longer asks her, and automatically carries her bag...
she does it before talking or asking so that it doesnt come up.. and acts normally about it
[role of good friends!]

- at school, she used to type everything

- has a special hand break and gear stick in her car

- currently works in a law firm and worries alot about what they think of her.
slow writing.. "theyre gonna think im not good enough"
"they all look clever and beautiful and in high heels, but i can't"

- at work: know her case - gets special care - special desk & seat - check up on her..

- likes to be integrated with society and be with everyone else. not isolated or in a special place.
not dwelling on it but getting on with things... talking to people..