Many people with lupus are still struggling to get diagnosed

Guest blog from LUPUS UK is the national charity for people with lupus, offering support and education, and funding research and specialist nurses. Please visit our website at www.lupusuk.org.uk     

A survey of LUPUS UK members, found that the average time between somebody experiencing their first symptom and receiving a diagnosis is seven and a half years. Alarmingly, this delay in diagnosis has stayed the same over a number of decades.

“Lupus is a great mimic. I would estimate that up to one third of the 650 SLE patients I have helped to look after in the past 30 years were initially misdiagnosed. Improving the outlook for our patients requires improving the education of both doctors and nurses; considering SLE in the differential diagnosis in a wide range of clinical features (especially in younger women); optimising therapy- which includes minimising the requirement for steroids and – as far as possible – ensuring that the on-going trials of the biologic drugs are going to be more successful than most of those undertaken to date.”

Professor David Isenberg (Consultant Rheumatologist, UCL)

“I’d been unwell on and off since around the age of 17. Over the years I had frequent trips to the hospital and saw many consultants for symptoms including; extreme fatigue, rashes and joint pains. I was originally dismissed as having growing pains and/or hormonal issues. Later I was constantly told I had depression or was a hypochondriac.  At 38 I was diagnosed with kidney disease after repeatedly finding blood in my urine. Eventually I was referred to a rheumatologist at Addenbrookes hospital. They did blood tests, which resulted in me being diagnosed with lupus, Hughes Syndrome and connective tissue overlap.” 

Karen Malt, 52

October is Lupus Awareness Month and LUPUS UK is highlighting the difficulty many people with lupus face in obtaining a diagnosis by releasing a striking new poster – ‘Unsolved puzzle? Think lupus!’ bearing the strapline, “It may take a while for the pieces to fall into place”, which is a commentary on how difficult it can be to get a diagnosis when doctors are examining symptoms in isolation.

Further information can be obtained from LUPUS UK, 01708 731251 or headoffice@lupusuk.org.uk