Hello I'm Jade I'm 16 years old and I've been diagnosed with lupus 😭

This lupus diagnosed into my body is frightening me...making my head go wild... I keep asking myself " am I dieing?" And " am I gunna be able to live a normal life?" And everything is getting to me for 3 months my body felt paralysed cause I got to the point where my mum had to take me to the toilet and get me dressed and bath me... I already suffer with depression as well and these tablets I am taking to keep my body going on a day to day basic are making me worse.... I still suffer with really bad chest pains/out of breath and heart pains ... my mum is really struggling to pay for me and need a quick way of getting DLA just to support us abit...

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  • Hello Jade and welcome,

    It certainly can be a really tough thing to live with. I'm much older than you, but also shocked at the sudden change in my life - I've only been diagnosed this year and I am still struggling to work out what the best treatments are and what I should expect in the future.

    But there are loads of very supportive people here. So try not to feel alone. No matter what problem you are facing, there are people here who understand what it can be like, and who will be happy to help if they can.

    Mikex

  • Hi Jade - welcome to lovely community, they even put up with me and I haven't got lupus!

    No, you aren't dying, and you will be able to live a much better life than you are at present once the doctors get your medication sorted out.

    I'm sure she won't mind me saying, but Barnclown on this forum was really diagnosed with lupus when she was little but was not told and never treated for lupus as such - just for the various symptoms as they appeared. In her late 50s (I think) a doctor put 2 and 2 together and realised what she has. She's now in her 60s and a very lovely lady. There are problems because of things having been ignored but she is very much alive!

    Good luck and I'm sure we'll hear lots from you xxxxx

  • Hi huni

    In a years time Ul look back and have more knowledge than ever

    What u have to remember is this illness is unique to each and every one of us because it's our own Dna so although we share stories and thoughts doesn't mean Ul have the same story

    What u need to focus on is u have a diagnosis which might not seem good now but it is because you can begin treatment

    Ur one of the lucky ones to find it this early

    It is scary I was 31 when I found out and I was very concerned about the future but the truth is no one is safe from illness it can happen to anyone we Dnt no our destiny so we have live in the day

    Please try not to google too much the best people to talk to are all your Drs they are the experts

    I wish u well and I hope once treatments start u begin to feel better

    Remember u are not alone we have all had this day u have had

    Any questions ask away

    Lovely community and caring xxxx

  • Hi, the replies you have had show how positive this site and its members are, lupus is not a death sentence. As for DLA now PIP there is no quick way of applying for it for lupus, but advise you ring to apply asap. Please get someone, such as citizens advice, DIAL, or benefits advisor to help fill it in with you. If your mum does not work maybe she can get carers allowance. You really need advice from benefits agency to see if you qualify. Sorry not anymore helpful but hope it settles quickly once meds take effect

  • Please contact Lupus UK for support. Best wishes Kevin

  • Hi Jade-anne_coulson17,

    Welcome to the forum.

    I'm sorry to hear that you have been having a difficult time. I hope that the treatment will help you to start feeling better soon. What treatment(s) have you been started on? You mention that the tablets are making you worse - what are the side effects that you are having the most trouble with?

    Most people with lupus are largely able to control their condition well with treatment and live a fairly normal life. You may need to make some adjustments to help you manage better, such as avoiding exposure to UV, pacing yourself carefully and maintaining a healthy diet and regular physical activity. If you need more information about lupus I would be happy to send you one of our free packs. Please just send me a private message or email paul@lupusuk.org.uk

    If you are anywhere near London, we have a support group for young people (16-26) with lupus which you may be interested in attending. We also have another secure forum specifically for this age group. You can find out more about support for young people with lupus at lupusuk.org.uk/lupus-in-you...

    For more information about claiming PIP or DLA and the support that is available, please have a look at our website here - lupusuk.org.uk/benefits/

    If you need anything else, please let me know and I'll do my best to help.

  • Hello jade-Anne πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹

    Am so glad you're here! If lupus is in your life, this is THE BEST place for really good company, sympathy, sound advice & even laughs...and we're here for both you & your hero mum

    Our PMRpro is right: i was first diagnosed & treated for lupus while I was an infant-teen in the USA. but my mother kept this secret from everyone. I thought I was just more sickly than other youngsters, and this was why I saw doctors so often. There were times I was vvvv poorly for quite a while...and then I'd have better patches.

    So when I moved to the uk at 21, the NHS knew nothing about my lupus. Whatever, between lifestyle management & the health system, I did make the most of life for 50-something years: I loved life here in the uk, had a career, travelled and survived all sorts of bad health patches & emergencies. Eventually, a brilliant NHS prof rheumatologist recognised the SLE underlying my health stuff..then my mother admitted the infancy diagnosis etc.

    And I've met others here who are pretty sure their lupus started way before the NHS finally diagnosed it. So, it's really good your doctors are getting to know your version of lupus now....and I hope you're letting both your GP & your lupus clinic know how you're feeling about struggling with the difficulties of coping with everything. communication is the name of the game...and now you're here on our wonderful forum: tell us how you're feeling about stuff whenever you can...and let your mum know we're here for her too

    Take care...and please keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • Hello Jade . I am 17 and was diagnosed at 15. . I have lupus arthritis and raynaurds .

    It takes a long time to come to terms with an illness like this and at such a young age . I still myself find it hard .

    I hope you get medication sorted and find what works for you .

  • Hello Jade

    Welcome to these forums and I'm sure you'll get to know a lot of people here who can sympathise with you whether they are your own age or older. I don't know if it helps to hear what's happened to other people but like you, I got really ill when I was 16 years old. I couldn't walk properly unaided and had to be helped to go to the toilet by my parents as well. I was so ill that I had to stop going to school and then my body decided to start packing up on me and I ended up with multi organ failure in ICU for a week and my parents were told to expect the worst. BUT . . . and a very big BUT . . . I got well again :) I won't say that this disease doesn't stop throwing spokes into the works every now and then but I am now 50 years old and did finish school and even went on to university - have got married and have a family. The world is always a scary place but there is beauty in the smallest detail. Try and find those things you love and enjoy and focus on that for now. Ask away with any questions - there's no such thing as a silly question and there's usually someone here who will help, even if it's just to say that they hear what you are saying and understand xxx

  • Hello Jade

    Welcome to our lupus family! it will also be a good idea if ur mum joins too. i was diagnosis with lupus in 2011 i was 26 am 31 now am still trying to manage my life round it. i have a 4yr old son but my mum still cares for me and him.

    At 31 i have very bad days that i cant get out of bed. my mum has to give me a wash in bed, help me 2 d toilet and feed me. I have a commode in my room but on my bad days i still need help to get to it. it is nothing to feel bad about. One thing i ve learnt with lupus is " when u cant, u cant" dont force it. as every one will tell u listen to ur body and stop when it tells u to.

    It is important that u apply 4 d pip and when u get it ur mum can apply 4 carers allowance. One advice, get help when filling the form(citizens advice) and make sure u tell them about ur worse days. Your not alone. I have been unwell all my life but only got diagnosised in 2011. we all understand u fears and worries.

    Your not dying any time some. You have not partied or worn high heel shoes yetπŸ˜…πŸ˜. So you ve plenty of time to enjoy ur life. Take each day as it comes and if ur a person of faith talk to God as a friend. It does help me in my lowest time. Your precious and Loved and things will definitely workout for d better. take care and God bless. we are here 4 u.

    Xx

    Ijeasike

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