i am 18 and had lupus since i was 12 and now finding it very hard, any advise ?

[lornaedwards]

[Looby]

Hi there Lorna - welcome to this site of friendly Lupies! Advice is tricky since we know so little about you...... you can "let off steam" here and no-one will judge you, as we know how tough living with these symptoms are.

Have you joined Lupus UK yet? They are very helpful and provide a DVD to give you a better understanding of the syndrome, and to see this from different perspectives (i.e. carer, family & friends, consultant, etc).

You may not think so - but to have a diagnosis when young is an advantage, because hopefully you will be having appropriate treatment (?) I never knew, as a teenager, why it was that I caught just about every "bug" doing the rounds at school and college - and always fighting fatigue. It wasn't until my 40s I discovered that I had hypothyroid, and in my late 50s, SLE - even now, no definite diagnosis, even though I have 8 out of the 12 main symptoms.

Tell us, what particular aspects you find hard, and we will try to encourage you......

Lin

[Paula1968]

Hi, I have suffered from Lupus from birth, rashes in the sun sore joints etc and was finially diagnosed at 17. I'm 43 now!!

At first I thought it was the end of the world, nobody had heard of Lupus in 1986 and I was given a life expectancy of 5 years!!!

Its good that you have been diagnosed early as you will get all the treatment you need to hopefully lead a semi normal life.

I still work and I now have a daughter both of which I never thought I would achieve back in 1986.

I hope you keep well and listen to your doctors and ask them for the support you need.

Paula x

[Paul_Howard Partner LUPUS UK]

Hi Lorna,

Whereabouts do you live, and where do you have your consultations?

I'm not sure if you are aware, but we have a support group specially for young people with lupus. It is strictly for those aged between 16-25 and they meet roughly every 2 months at UCH in London.

You would be more than welcome to join them. It might help to meet some other people with lupus of a similar age to you and find out how they cope. It's all very informal and generally a good laugh.

The next meeting will be September 2nd. Let me know if you'd like more details.

Best,

Paul

LUPUS UK

[lornaedwards]

hello, i have been through alot ythewse through years, have been in hospital many times the last two times have completly shook me about, thought i had meninjitase and have lost all my hair and has affected my kidneys. i am glad they have got it ealrly but i dont seem to be getting better, im so depressed ta the momemt, i have recently got a apprentice and find it very hard doing full time hours, i have been through alot and had alot of treatment had to have a lungaounca 6 times to have fluid out my back. Also have got pluracy very bad. in may i bblowed up like a ballon very bad, i have not got sever strech marks, things seem to be getting from bad to worse, i can cope with it very well but someimes i wish i could have abot more advise and no one really knows in my family what im going through,

[Herb]

Hi Lorna,

I too had lupus when I was 12, I am 45 now, I am not sure if that will help you. We did not have the internet when I was 12 and I did not know anyone else with Lupus. I was in hospital a lot and had to take time out of school.

Lupus should not stop you doing the things you want, but if you need extra help don't be embarrassed to ask for it, it is your right. Congratulations on getting your apprentice, I understand you may find it too much to do full time hours, do you have any kind of adviser who could help you on that issue, do you still have connexions service in your area?

Lupus does respond to treatment and you can go into remission where your symptoms go away, but you may have to try different ones before you hit on the right one for you.

Best wishes,

Herb