Neuropsychiatric webinar.

[happytulip]

Hi,I have seen from Cocos post that the webinar about neuropsychiatric Lupus will be available to watch on YouTube. Can anyone from LUK confirm when it will be available please? I was really sorry to have missed it as it sounds like it could benefit both me and my family.

My father had a real grasp of the symptoms of lupus but I've noticed that since he died at the end of 2021 there has been less understanding and more frustration within my family about symptoms and progression of the illness. I think the LUK you tube channel might be able to really help them take note and get a better understanding. That's what I'm hoping anyway.

Thanks

HT.

[Debbie_kinsey Administrator LUPUS UK]

Hi happytulip

Unfortunately there will be a bit of a delay as there was a problem with the recording, but we hope to have it up by late August.

If you're looking for some general videos to help you family understand lupus, we have a few on the channel you may find helpful:

- This playlist has lots of videos from different people talking about their experience of lupus: youtube.com/playlist?list=P...

- We have a few very short overview animated videos like this one: youtube.com/watch?v=Txx2jZy...(Not working as expected?) ,this one: youtube.com/watch?v=_B6c6k3...(Not working as expected?) ,and this one: youtube.com/watch?v=gKL8BT-...(Not working as expected?)

I hope that's helpful. Let me know if I can find any information or send you any leaflets to share with your family.

Take care,

Debbie

[chrisj in reply to Debbie_kinsey]

Thank you for those, easy to understand and short. I like the two side by side comparisons on the struggle to wake up and get ready for the day xx

[FredaN in reply to Debbie_kinsey]

Oh no! I was really hoping it would be up before my next appointment, as I think it probably addressed some of the problems I'm having. I'm kicking myself for forgetting to watch it live.

I look forward to seeing it anyway - it'll be interesting to see what the specialists have to say on the topic and useful for the future I'm sure.

[happytulip in reply to Debbie_kinsey]

Thank you Debbie. I have already given them the leaflets and I think they have helped. I've had SLE for years but was diagnosed in 2014 so my family should know about such things. On reflection I think it was my father who was most informed and he used to read the LUK magazine, every page.

Since his sudden death at the end on 2021 my family haven't been as supportive and despite me warning them that I was at risk, I was exposed to Covid in Dec 2022 because of my mum. I then went into what can only be described as a significant neuropsychiatric flare. Unfortunately my family just thought I had started "behaving badly" at the age of 41. In fact I was really unwell and yes my behaviour was "off" but it was due to brain inflammation, not me suddenly turning into a brat.

It would be very helpful to know when the webinar goes onto you tube so I would be very grateful if it could be announced on the forum. Is that possible?

Thanks so much

HT

[Debbie_kinsey Administrator LUPUS UK in reply to happytulip]

Hi Happytulip

Sorry to hear your family haven't been as supportive or as understanding as you need. I'll definitely announce in the forum and on our social media pages when it's live. Apologies again for the delay.