Skip to content

Posts tagged ‘patient’

How research can give patients a voice

Eilean MacDonald

Eilean MacDonald was diagnosed with childhood arthritis when she was only a baby. 18 years on, as well as dealing with normal teenage life and managing her condition, she’s helping MRC researchers on a stratified medicine study to pick the right treatment, first time, for future patients.   

It all started when I was 18 months old and I bumped my knee. My parents noticed that the swelling wouldn’t go down, and took me to our local hospital. They ran tests but the doctors couldn’t figure out what was wrong, so I was referred to the rheumatology department at Alder Hey children’s hospital, where I was diagnosed with Juvenile Idiopathic Arthritis (JIA). Read more

Why patient involvement in research matters

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.

Jane Dunnage (Image copyright: D Boyraz)

Jane Dunnage (Image credit: Derya Boyraz)

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”.

Read more