Study investigating journeys to diagnosis recruiting people with lupus, Sjögren’s, and/or UCTD

[Debbie_kinsey]

A new study is investigating why it takes some people a long time to get diagnosed with systemic autoimmune rheumatic diseases (SARDs) like lupus, UCTD, and Sjögren’s, but other people have a much shorter time to diagnosis. The researcher hopes the findings will help improve healthcare for people with SARDs.

You can read more about it on our website here: lupusuk.org.uk/diagnostic-j...

Or sign up to take part & share your story here: swansea.onlinesurveys.ac.uk...

[whisperit]

This is such an important study - how many of us here spent years in a diagnostic wilderness, accumulating all the physical and psychological damage that delay and gaslighting causes? Hope lots of people take part x

[robertbob]

Fo me it was the combined effect of out of the blue serious illness, and then being undiganosed and often dismissed for five years, which proved so destructive. I lost my health, marriage, career, home, happiness and at times felt like I had lost all hope. All it would have taken for a diagnosis would have been the GP making the right referral and someone ordering the right blood tests.

I hope that this and other studies will help ensure that in future when people develop symptoms of what could be a systemic autoimmune disease that clinicians will be more likely to recognise them and more likely to take steps to diagnose and treat them in a timely fashion.

[Lupiknits]

This is very important research.

I’m taking part in research that is trying to find out why it takes so long to diagnose systemic sclerosis. At the moment the average is seven years.

[Bbmuso]

Decades and still waiting, I'm closer now with Connective Tissue disease and Inflammatory arthritis (Plus seperate heart, neurological and circulatory) but still no ultimate name for my shame.... This research is so important for not only the health, but mental wellbeing of patients. There's nothing worse than being very ill and not being given a reason why, then relying on your one appointment every 14 months to hopefully relieve your agony!!

[thestorm]

I am across the pond, can I take part in this study? Hope , we all need that where ever we are. Thank you, blessings, The Stormy Sunshine

[robertbob]

Hi thestorm

Unfortunately, its just people resident in the UK, as part of the purpose is to investigate why the diagnoses of some SARDs (such as Sjogren's) take longer on average in the UK than in a lot of other countries. But hopefully a lot of the findings will be applicable to other countries as well. I also think there are some quite big differences within the UK, with, for example, Wales short on specialists and (as I I found) healthboards here are very reluctant to refer to across the border.

best wishes

[RupertW-SUMS]

Hi

For an update on the progress of this study, please see this post: healthunlocked.com/lupusuk/....

Or ask me any questions here.

thanks

Rupert