Young people with Lupus

[JessR1995]

Hi Im Jess, Im 23 and Ive had Lupus SLE since 2011. I've just recovered after a severe flare up of Lupus in my brain and a long hospital stay. I have flare ups regularly and in the last year it has affected my brain 3 times which has been very scary. Im on the mend now and determined to beat this and start to make a new start for myself. I used to go to London and meet young people at the Lupus UK meeting but find it a bit of a long day. I am just wondering if there to is anyone around my age or close to that lives in the Sussex area who suffers with Lupus. Would be great to set up a Sussex group if one doesn't already exist as I would love to meet people who understand.

[Melba1]

Good for you Jess, so sorry you had lupus at such a young age. I have recently been hospitalised with cerebral lupus too so you have my great sympathies, it’s a very unpleasant area to be attacked.

I have about 20 years on you and I’m not in your area but hope you meet some lupus friends your age near by, so important to have that understanding about the highs and lows of lupus.

If you want to message me about the brain side of things or anything else, please do and you’ll find this whole group very supportive.

Are you recovering well? Hope the medications are kicking in xx

[Kevin53]

Thanks Jess. It’s good to see your determination. There are over 22000 using this fantastic site. So hopefully we can find some more support in Sussex. Please contact Lupus UK as well and we can try and help. Best wishes Kevin

[linicole]

Hey! Is there a Facebook group for young people with Lupus? Maybe we can start one and connect young people all over the world! Let me know what you think!

[Lisalou19 in reply to linicole]

That would be a great idea. I can’t imagine what it must be like for younger folk to be going through this battle . X

[ellejay46]

Hi Jess, nice to meet you! I’m 19 and have had uctd from 2012 which evolved to lupus SLE in 2016. Sorry you had to go through that – it is scary. I also had a severe flare up of lupus in my brain and spinal cord 2 years back. It’s great that you’ve recovered, things will get better! (p.s. I’m not from the UK 🤭)