Jane Dunnage was forced to give up work due to the rare autoimmune condition systemic lupus erythematosus, also known as SLE or lupus. After 10 years of being a Trustee for the charity LUPUS UK she now leads patient involvement for the MRC-funded MASTERPLANS* study. She explains why research needs the patient voice.
I had to give up my job in communications about 20 years ago because of the symptoms of lupus. It was affecting my eyes and my joints, and the fatigue was extremely disabling. I found it impossible to carry on working.
But it was another four or five years before I was actually diagnosed. I became a ‘pass the parcel’ around different consultants and departments for a year. Then somebody at long last recognised the link between the wide-ranging symptoms and said, “I think you have lupus”.