How many Lupus patients in the UK?

[Dalilatm]

Hello everyone!

Does anyone know how many Lupus patients are there in the UK?

Thank you!

[PMRpro]

Does this help?

lupusuk.org.uk/wp-content/u...

This

resources.lupus.org/entry/f...

gives actual numbers for the USA.

I'm sure Paul_Howard has numbers...

[Dalilatm in reply to PMRpro]

Thank you! Quick reply and those two links are really good. As you said, Paul_Howard surely has numbers.

[Paul_Howard Partner LUPUS UK in reply to Dalilatm]

Unfortunately we do not have very reliable numbers. As there is no register for lupus patients in the UK, and many people with lupus are seen by various specialists, it can be very difficult to get an accurate figure. Estimates for the number of people diagnosed with lupus in the UK tend to be anywhere between around 15,000 - 30,000. There is a very good chance that there are more people that this though, because there are many cases where it is not currently diagnosed.

Getting reliable figures for this is one of the big interests of our Chair of Trustees, Kevin Weston (Kevin53 ).

[Kevin53]

Yes this is a very interesting area. With Lupus more prevalent in females and different global backgrounds it is very complex. A recent survey that I am working on indicates a 15,000 - 60,000 range. Early days though! Best wishes Kevin

[Dalilatm in reply to Kevin53]

Thank you, Kevin53 and Paul_Howard

Indeed, it's an interesting area and also these numbers are useful. Shouldn't be easier nowadays to track this? Meaning better communication (Internet, etc), not more accurate diagnosis (not yet). Does Lupus UK have some sort of basic number/ floor of Lupus patients based on the number of members?

Interesting link/very basic about disease registers. It seems they are difficult to get, but not impossible:

healthknowledge.org.uk/e-le...

[Paul_Howard Partner LUPUS UK in reply to Dalilatm]

As Kevin53 has said, we have approximately 5,000 members of LUPUS UK at present who pay us £10 per year to receive the magazine and news from their local groups, but there are many more people who choose not to join and access our services then support us in other ways.

We have a much bigger following online with over 16,500 members of this community and almost 25,000 people who have 'liked' our Facebook page, although this does include some people who do not have lupus and people who live overseas.

[Kevin53]

Membership wise we are a little like the lifeboats. We provide lots of free info and support. Some folk dip in and out when necessary others join and for £10 get our excellent magazine.

HealthUnlocked now has over 15,000 participants and provides a superb support network. Best wishes Kevin

[Dalilatm]

Excellent! Thanks Kevin53 and Paul_Howard Both very helpful. Best of luck with the survey @Kevin53 I'll keep an eye on any new number/ update.

Best wishes,