Lupus London patient meeting

[Loula82]

Just wanted to say a big thank you to everyone involved in arranging the London Lupus and Hughes Syndrome patient meeting. I attended on Friday and after listening to stories, am very thankful for Lupus Uk, this site and the information available to everyone nowadays on the internet.

Also extremely grateful to have Consultants who were brave enough to start me on treatment and help me without every single blood test being positive. I am ANA positive but not anti-dsdna.

So nice that people are out there supporting each other and that there are consultants out there that really do care and actively participate in these events.

A big takeaway was how important it is that you educate yourself, learn as much as you can and when needed fight for yourself, there will absolutely be times when you know more than Drs and you need to remember this and fight for what you know is best.

Thanks again to everyone who helped arranged this event.

[Wendy39]

Really pleased to read your post. I wanted to attend this but couldn’t. I’m hoping to make the next one. Which doctors attended?

[Loula82 in reply to Wendy39]

Hi Wendy

The Doctors who spoke were Dr Arvind Kaul from St George,s, Professor Graham Hughes from London Lupus Centre and Dr Natasha Jordan from Addenbrooke’s.

Take care.

[Wendy39 in reply to Loula82]

That sounds like a great line up. X

[Loula82 in reply to Wendy39]

They all seemed interested in patients symptoms, in research, in learning more and the advances happening in medicine. If only all Drs felt that way.

[Kevin53]

Excellent. Best wishes Kebin

[Kevin53 in reply to Kevin53]

Kevin!!

[Horsewhisper]

Thanks for the feedback Loula, most helpful regarding educating yourself and knowing what’s best for you. This seems to be something that resonates with so many people here, so it’s great to hear that this advice has come from a patient meeting with expert Lupus doctors in attendance! Be well xx