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The Rare Autoimmune Rheumatic Disease Alliance

Stories

Sue: “When you do understand it, you can learn to live with it and to deal with it”

– Scleroderma

Maryann: “I was a fighter. I guess my body was so used to my ‘warrior’ attitude that it decided to fight itself too”

– Lupus

Dave: “I honestly don’t believe my GP fully understands my situation – he doesn’t have time”

– Vasculitis

Susie: “Every morning when I wake up, I wonder what kind of day it will be”

– Sjogren's syndrome

Dalila: “With lupus, you don’t know when your next flare will be.” 

– Lupus

Avtar: “Setting up this amazing group has definitely been worth it”

– Scleroderma

Sara: “It was daunting to have to self-manage without much information so early in the scleroderma journey”

– Scleroderma

Teresa: “It is comforting to meet people who understand”

– Sjogren's syndrome

Pam: “It’s been difficult to accept that I can no longer do things that I used to love doing”

– Sjogren's syndrome

Margot: “I had a lot of people telling me it was all in my head”

– Sjogren's syndrome

Una: “I’ve had to be my own advocate”

– Scleroderma

Sarah: “Furlough support was too late to help me”

– Vasculitis