Study investigating journeys to diagnosis recruit... - LUPUS UK

LUPUS UK

32,249 members28,608 posts

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

Debbie_kinsey profile image
Debbie_kinseyAdministratorLUPUS UK
7 Replies

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...

Written by
Debbie_kinsey profile image
Debbie_kinsey
Administrator
To view profiles and participate in discussions please or .
Read more about...
7 Replies
whisperit profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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

Not what you're looking for?

You may also like...

A LUPUS UK funded study about exercise & lifestyle in SLE is recruiting now

As you know, lupus can affect people differently. Some researchers in Birmingham are conducting a...
Debbie_kinsey profile image
Administrator

Investigating gut health in SLE - findings from a LUPUS UK funded study

A recent study, funded by LUPUS UK, found that people with SLE may have a "leaky gut", also called...
Debbie_kinsey profile image
Administrator

NEW LUPUS UK community study to sign up for! - RECRUITMENT NOW CLOSED

Thanks to an overwhelming response from people volunteering for this research study, it is now...
Paul_Howard profile image
Partner

Lupus/UCTD, Chemotherapy and Research

Hi all, I'm just wondering if anyone here has had a similar experience of developing a connective...
panda2 profile image

Lupus re-diagnosis UCTD

Hello All, so when I last posted I had been to the rheumatologist Prof X and told my bloods were...
KeepingUpBeat profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.