Participant Stories

fb19ca_3a6490d843724c1582237640b3b46425-mv2

For patient Elena Lilley, taking part in a research study to improve her kidney function has proved life changing.

Elena was first diagnosed with atypical haemolytic uraemic syndrome (aHUS) in 2005, which left her needing to travel from her home in Barnstaple to Exeter three times a week for plasma exchange treatment. Her kidney function had been badly affected and she would soon need haemodialysis treatment.

In April 2010 doctors at the RD&E suggested to Elena that she would be a good candidate for a research study run by the CRN using a new drug called Eculizumab. “It was quite daunting and there was no evidence that it would work, but I was always positive about it. I just thought – do it and see. I couldn’t carry on the way I was” said Elena.

 Throughout the three-year study, she received the drug intravenously at the RD&E every two weeks. She has seen a remarkable improvement in her kidney function – from 5% to 20% – and continues to receive the drug. Elena said: “It has made an indescribable difference. I don’t think of myself as poorly any more. I’ve got more energy and was able to take on a full-time job. It really has completely turned my life around.”     

 Thanks to her own positive experience, Elena is keen to raise awareness of the importance of clinical research.  “I always thought, if it doesn’t work for me then it might help someone else. If you don’t try then you won’t know”.