How old was you when you found out you had autoimmune disorders

I'm only 21 so this has come as a massive shock, you don't think you can be so sick so young. I feel about 50! Was Just wondering How many others have had this at a young age and How they coped?

[Sher78]

Diagnosed 4 days after my 16th birthday basically cos it caused me 2 have a stroke. Looking back now (at the grand old age of 34 lol!) after the initial diagnosis & a 9 month stay in hospital, I coped cos I just got on with things as normally as I could, plus I think it was all a bit surreal & the fact that I had come through it all made me realise that I had 2 make the most of what I had.

[Hidden]

Does it get any easier? Surely it can't always stay this way?

[Sher78 in reply to Hidden]

The best piece of advice I can give u is 2 learn 2 listen 2 u're body. The more u learn about u're own reactions 2 lupus, the better prepared u'll b. I have gone 4 very long periods of having only little hiccups here & there & have even had 2 healthy kids, despite docs saying it was impossible 4 me 2 get pregnant, let alone give birth 2 'live' babies (mainly due 2 all the surgery I had when the lupus was first diagnosed). Lupus is NOT a 'Text Book' illness & affects us all differently so by all means b aware of what CAN happen, but don't expect that what u read/hear has happened 2 others will necessarily happen 2 u. And try 2 remain as optimistic as u can. ;0)

[vegabond in reply to Sher78]

Hi Sher 78, can i ask you a question please? changing the subject sligtly?... i was to diagnosed at 17 spent months in hospital etc. Just like you i have the odd hiccups here and there and hospital stays. I have stage 2 kidney involvment to. Im turning 32 this year and my question is on pregnancy can i please ask you how your pregnancies were? my consultant says there are of course risks involved but i should just go for it but i am extremely scared of becoming ill, the risks, will i be well enough to look after the baby etc, when i discuss my fears to my consultant about being ill she just says ''but you will have a baby at the end of it'' i was wondering if you could share your experience? i know you never quite know with pregnancy. anybody else please feel free to comment to. Thank you.

[Paul_Howard Partner LUPUS UK in reply to vegabond]

You might like to take a look at our factsheet on lupus and pregnancy if you're interested in a bit more information. You can read it here - lupusuk.org.uk/want-to-know...

[vegabond in reply to Paul_Howard]

Hi Paul, thanks for that i'm aware of all facts, statistics etc and have even have a per-conception meeting with my Lupus consultant,was after a personal experience aside all the facts and figures etc.

Thanks anyway have a good day

[fragorosvar]

Got it when I was 17 (22 now) and I am still learning how to cope with it. But, it does get easier. I went through the first years by setting up short term and long term goals and worked towards them. I made it so that I had so many things to do that I wouldn't think too much about lupus. I don't know if that's a good way of handling things, but that's how I did it.

[kinnea]

Diagnosed at 19 years old. I'm now 51. I have had a pretty good life. I got married had two sons, both grown up and healthy. Always been in employment and not had a lot of time off. I've been lucky the SLE has always been pretty well controlled. Couple of times it got out of hand but I'm still going. Watch your diet. Keep as active as you can. Have a positive attitude and keep your head up. Don't expect any real sympathy from your colleagues/friends, if you want sympathy you should get a disease people can see. The only people who will sympathise are those who can empathise i.e people on here.

[DaleDiva]

I was diagnosed at 51 but with hindsight I have probably had it for the last 10 yrs. What surprises me is the amount of young people being diagnosed. My daughter is 18 and has been ill for 18 months with what I am fairly sure is some type of auto-immune disease.

I would ri-iterate what previous posters have said. Learn to listen to you body. I work part-time with supportive colleagues and try to just go with the flow.Learn to say No and mean it

[JenniferZhou]

Diagnosed a few days before my 18th, I'm 19 now.

The only thing I could say is to know when to stop and rest. I still find that difficult now and personally it's possibly the hardest thing for me to cope with about Lupus. There have been countless times where I haven't wanted to let friends down, or have been ill and shouldn't really have been at uni but pushed myself to the point of passing out or triggering a massive flare.

[largesse]

My daughter is 21 and was diagnosed a year ago with sle. With the help of her meds she is feeling much better (not altogether perfect!) and now has a full time job. She tries not to think about her condition and doesn't like to talk about it with her friends.

It is very hard to accept when you are so young but with support from family and friends hopefully you'll learn to accept it and not overdo things.

Best wishes and lots of spoons xx

[Sher78]

I think learning 2 'accept' it is a very big step. The sooner u can honestly & truly do that, the sooner u can get on with u're life as best u can cos if u aint crossed that hurdle, it'll knock u 4 6 when u do :0/

[Hidden]

Thank you guys nice to hear other peoples stories. HOpe your all doing well today love to you all Xxxx