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15 years old with Lupus :/

Discussion in 'Living with lupus' started by Amy10, Apr 11, 2011.

  1. Amy10

    Amy10 Registered

    Hiya everyone as i have said on previous posts i was diagnosed with lupus last year. If there is anybody who is around abouts my age who knows about or has been diagnosed with SLE i would love to get to know you and discuss the lupus. any advice would be brilliant, thanks.

    Amy xxx
     
  2. Maia

    Maia Registered

    Well, that's certainly not me! But check out the older threads in this forum and you should find some others that you can Private Message if they don't come along and respond soon enough. :)
     
  3. cally

    cally Registered

    Hi Amy,

    Sorry no one else has responded to your thread yet, as Maia said you can go back and search for threads about younger people. I am 21 and was diagnosed when I was 19, so I have a bit of experience of being young...not quite as young you are and I am really sorry you are having to deal with this at such a young age. How do you find school? How have your friends reacted? What treatment are you on?

    It can be quite hard when you are first diagnosed and you go through a lot of emotions, that is totally normal. Post away as much as you like. We do have a lot of older members but they are great, a lot were diagnosed when they were younger and so can relate, or will still have great advice for you! Hopefully some of the other young members will be back on soon, they have been a bit quite recently so you might need to be patient. Feel free to PM me if you have any questions.

    Take care,

    Cally x
     
  4. Alexia

    Alexia Registered

    Hi Amy

    My son is 15 and I will show him your post and suggest he private messages you. He is waiting to be seen by a consultant rheumy in London next month as the consultant rheumy locally thinks he may have lupus. He knows quite a bit about lupus as I have it too. At least he is the same age as you. You are not alone!

    Be positive.

    Alexia x
     
  5. Amy10

    Amy10 Registered

    Thankyou guys for replying :) Thankyou Alexia i think i would find that helpful.
    Cally i will go back to some older threads :) I'm doing my GCSE's at school so i am really struggling at the moment. Teachers don't seem to understand what i am going through just because i look as healthy as everyone else. I miss a lot of school with hospital so that makes it even more difficult. I don't really have any friends as i never have the time to properly build up relationships with people. At the moment i am taking predniselone, cellcept, hydroxichloroquine and diclofenac. i did have to go for a steroid drip for three days though at one point.

    Amy xxx
     
  6. cad

    cad Registered

    Hi Amy and welcome,
    I really hope you do get in touch with other younger lupus patients, as they are the only ones who can really understand being a teenager and dealing with lupus. It must be very tough on you dealing with lupus and having your exams and stuff. My son is 15 and has diabetes and itS hard enough for us to manage that let alone dealing with lupus and all the meds and just feeling run down all the time. You are very brave. Maybe the site can help you get hold of some good info that you can present to school, amybe some of the teachers would look at it and could understand better.

    We have also just bee sent a letter for my son from our diabetes nurse that is kind or an exemption or a pass for exams, it allows him a bit more lee way in terms of he may need to treat his illness or go to the loo more or have more drinks or take mediaction, or may have to leave the exam, or if he was ill on the day it might affect his performance and he can resit. I am not sure if there is such a thing for lupus, but I had no idea we could get one for diabtes untill our nurse mentioned it just a few weeks ago.

    Good luck with everything, and lots of luck in finding some lupus buddies.

    Cassie.
     
  7. Rav

    Rav Registered

    Hi Amy, I've just recently joined this forum and read your post. I'm a bit older than you (22) but I was 11 years old when I was first diagnosed so I can understand a little of what you're going through. It must be really difficult to keep up with school work and especially so if your teachers don't understand what's going on. But everyone here is really supportive so you're definitely in the right place. I know I'm not quite at the same stage as you, but if you ever want to ask me any questions of how school was like for me, then I'd be more that happy to talk about it. It might sound a bit scary, but have you been given the chance to talk to your teachers about what you're going through?
     
  8. cally

    cally Registered

    Sorry I am late getting back to you. It is so hard when physically you look just like everyone else....yet you are not. I have to say...someone said to my Gran today There is nothing wrong with her, she looks perfectly healthy to me. It sends me round the bend. I don't feel I should have to prove I am ill! Grr!. Do you have one close friend who you can confide in and explain to?

    I have had the steroid infusions too, they suck eh? And missing school always sounds much better than it is! Feel free to PM me whenever you want and we can chat. It must be really difficult for you.

    We are on really similar medication too so we can talk about those as well.

    Take care and try to keep your chin up, things to get better as your disease comes under control.

    Cally xx
     
  9. filmguy

    filmguy A bit loopy

    Hi Amy,

    I'm 17 years old and male! Being young and male around here seems to be a rarity! Although I don't post much in forums these days as life is really busy with school work and all the other things we have to deal with, you are always free to send me a PM and have someone to talk to. I was diagnosed just a few years back so I'm sure I can relate to many of the things you are going through.

    Take care!
    Alex :)
     
  10. Josephine M

    Josephine M Registered

    Hey Amy, I'm Jo and i'm also 15. :)
    I was diagnosed with Lupus last summer when i had a serious flare. I spent 6 monthes out of school and like you, i've fallen behind with my GCSEs. It is really hard to begin with, but it does get better. I've asked for extra help with my core subjects and i've dropped a few other subjects to lighten the load. Not many people around me really understood what i was going through and i found myself repeating the same thing over and over 'that i just got tired'.
    On the medical side of things, it has got a lot better for me, but it did take a long time.
    If you ever want to talk, I'd be happy to listen :)

    Hope you're feeling better soon xx
     
  11. SomedaySomeone

    SomedaySomeone Registered

    Hello there! :)
    I was diagnosed during the week of finals in my second semester of freshman year (in high school), which means I was diagnosed when I was (Oho!) 14...
    Thinking back on it, that's way too soon!
    But I'm approaching the end of my senior year now...High school sure had its ups and downs.

    :/ My school is ultra-competitive, so that's probably how I got lupus. I figured it was about time I joined a forum for lupus, it's hard going it alone/with a few other people.
    I have a kidney complication, which isn't so fun...But I spent three days in the hospital on cytoxan (is that even spelled right, I don't know) when I was first diagnosed, and then sent home. My fight with lupus has been a hard one, like everyone else here...and there's a lot to say. Hahah, feel free to shoot me with questions if you have any, since I've lived through what you're about to go through. :)

    Good luck with school, take your medicine (hahha...), and remember to sleep!
     
  12. SomedaySomeone

    SomedaySomeone Registered

    (Wow, sorry that was so obscure, my username is uh...reflecting some personal doubt. XD Anyways, nice to meet cha! My name's Tiffany :)
     
  13. cally

    cally Registered

    Welcome to the forum Someday. You might want to start a thread of your own and introduce yourself so we can get to know you as an individual, under the 'introduce yourself' section. You sound like you have had a hard time of it at school. It is unlikely that anyone will ever be able to tell you 'why' you got lupus, whether it be a genetic predisposition, an environmental trigger etc etc I think that is something many of us wonder at some point or another.

    Being diagnosed at a young age is very hard, its difficult for your friends to relate and even harder for you to 'fit in'.

    Welcome to the forum!

    Cally x
     
  14. QuinnGirl1

    QuinnGirl1 QuinnGirl1

    Hi Amy,
    Im 17 and was diagnosed when i was 13 so if you have any questions ill try to answer them :)

    Erin x
     
  15. Amy10

    Amy10 Registered

    Thankyou to the people who are replying, ive finally found a place where people know what i'm talking about!! I have a few questions like how exactly to explain Lupus and i don't know what actually causes it :/ Another thing i was looking for advice about is mood swings and how to reduce them. I am going to the doctors this Friday to talk about feeling depressed, so i hope they do something. i keep having massive fall outs with my parents and also my boyfriend feels as though he can't help me :( xx
     
  16. ElephantEyes

    ElephantEyes Registered

    I think it is a good idea to talk to your doctor about being depressed, once my rhuemy said to me that depression in lupus can be caused by the illness itself as well as there being reactive depression to come to terms with having a chronic illness.

    I think it's hard for family to understand in general - have you showed your family and boyf the spoon theory? We have a couple of resources for family and friends here https://www.thelupussite.com/forum/s...The-spoon-theory-letter-to-family-and-friends and a sub forum here

    https://www.thelupussite.com/forum/forumdisplay.php?46-Just-for-Family-Friends-Caregivers

    Hope this helps
     
  17. oesa

    oesa Lisa_S

    Hi Amy - just caught your thread today. I'm 39, but was diagnosed when I was 14, so I think I have some idea of what you're going through... I'm glad some of the younger members have welcomed you as well - being 14 was a lot different 25 years ago than it is now. I"m doing quite well these days, I am still on some meds, but have a pretty normal life other than a few more doctors appointments that most people.

    There is some good information on the main site about lupus generally - I'd start here: http://www.uklupus.co.uk/lupus1.html. Be careful about internet research, there is lots of outdated information that can sound kind of scary out there, so I usually stick to sites like the Mayo Clinic or the National Institutes of Health in the states.

    This is also a really good place to ask for people's individual experiences, and for support. We're here for you!

    Hope your appointment on Friday goes well, keep us posted.

    Cheers,

    Lisa
     
  18. cally

    cally Registered

    Hi Amy,

    I think you have to remember that it is normal to have huge fall outs with your parents at your age - and having the stress of being poorly will make that worse. They will probably (I'm guessing here) be more protective of you than your friends parents because their daughter is not well and they want to wrap you up in cotton wool - which is understandable but probably drives you nuts. My Mum is still the same and I'm 21!

    It is important to talk openly with your family (your bf included) about how you feel about your diagnosis, your worries and all of that. Be open and honest and have all of those conversations, the spoon theory and other pages off this site are useful to have around when you are talking to family and friends so that they can understand more what you are talking about.

    I think it is quite common for boyfriends to feel helpless when they see you sore and miserable, especially when it is getting you down. So you have to try and help them to help you. Give them little things to do that make you feel better. Like whatever you like, things I go for are a foot rub, a back massage, cooking me a nice dinner, taking me on dates when I feel up to it - like the cinema or out for a meal. If they know that those sorts of things make you feel better then they feel like they are helping, admittedly it is a lot easier when you are older and they can do really useful things like taking out the rubbish, changing the cat litter, doing the laundry etc but I'm sure you can think of things that would make him feel useful just now.

    Just so you know, it is totally normal to feel down or depressed, it might be the disease itself or the fact that you have a chronic illness, either way - it is normal and there are loads of ways of treating it from medication to counselling, whatever is going to work for you and fit around your needs, I hope your doctor is helpful in talking through some options with you.

    Take care,

    Cally x
     

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