Younger Sufferers?

Hi all, my 15 year old daughter has recently been diagnosed with RA, Lupus & Sjorgrens Syndrome, we aren`t really managing to `plan ahead` or help her , got little / no info from the Dr, & struggling big time with meds, exhaustion...etc etc. ANY recommendations/advice supplements, diet will help. Have had loads from the Lupus UK, guys.

Ellie just wants to try & get a balance & go out with her pals again.

XX

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  • Hi,

    Although I wasnt diagnosed until 2007 at age 45, I can trace my first symptoms back to the age of 14.

    My doctor (fam. pract) was very helpful, he has 4 other lupus patients. He gave me a list of books to read to help me understand and a lot of info he knew. I also did a lot of internet research. I went to webmd , mayo clinic and the lupus foundation web sites.

    A lot has come from my Lupus Family on facebook. I love them, there's a whole lot of support and answers there. You will find that what may work for one may not for another. and what may have helped last week, wont help this week.

    Please do as much reading on it as you can to help your daughter. So far your on the right track, you will find that a lot of Lupies lack support and understanding. So a strong support system will help a lot.

    Let me know if there's any particiular questions you may have that I may be able to help you with,

    Hoping the best for your daughter.

    Rhonda

  • Hi northerner. Sorry to hear about your daughter but don't worry she will be ok. I was diagnosed with SLE in 2010 and I really suffered at first but now I lead a practically normal life. Most important thing for your daughter is to stay away from stressful situations. It causes flares in lupus. I learnt that the hard way! Follow the medication regime daily, she will feel the benefit, exercise regularly, eat well and stay positive. I went to see an alternative therapist dr jan de vries in London, one of his colleagues pointed out to me how important it is to take meds properly or they wont work and he gave me some herbal meds to help with the side effects of the lupus meds. Honestly, she will gk through some bad times, but with love and support she will be ok. Xx like rhondab said, any questions just ask, we are a community on here and we help each other xxx

  • Hi,

    I don't know if you would be interested, or if you'd be able to get there, but we have a meeting for young people with lupus this sunday in London. It says 16-24 but your daughter would be most welcome. Details can be found here - lupusuk.org.uk/children

    LUPUS UK's chair, Jane Dunnage, does a lot of work with our younger members. If you'd like to speak with her and see how she can help, you can call her on 0208 9812766 or 0787 6057447

  • Hi my Son was diagnosed last September aged 14 , it has been a rollercoaster getting treatments adjusted and a tough battle emotionally for him and hard for us as a family too. He has missed most of this school year but in the last week things are starting to settle and he is feeling better and more positive . If you want to chat to me let me know .x

  • Hi, I am writing from the US. I was diagnosed with lupus 40 years ago at the age of 13. So the prognosis for your daughter is not necessarily negative. At first I was quite ill and they gave me (what was then new treatment) prednisone and Imuran. Fast forward 11 years I was in remission with no meds for many years. Studied Chinese, lived in CHina, traveled, worked etc. Yes, I still suffered from some fatigue and joint pains and had to be careful when I got sick but I learned how to live with it, and tried not to let it define me. Humor and keeping busy help. I figured out at an early age that I will feel like crap whether I am doing something or not, so I might as well be doing something which might take my mind off of it.

    Lupus is hard on teenagers. So try not to tell her what to do (or not do) too much. Of course you are her mother so you know what is best for her, but she won't always agree, and sometimes she will just have to figure out her limits herself. Teenagers want to do what everyone else is doing and not feel like someone different. Maybe she can pace herself and only do other activities on non-school days. I remember feeling frustrated because, although I was very thin, the prednisone gave me a moon face. I wanted to wear a sign that said, "I'm not fat it's the medicine". So if she says something about feeling sorry for herself, acknowledge that having lupus isn't fair. She doesn't deserve it, but she can live with it and have a great life.

  • Hi I thought I would just add to this and say I was diagnosed with Lupus at 16 and have had JIA since I was eight and am now just finishing my degree in creative writing at university. I think my best piece of advice would be ask for help. My school and university have been amazing, I kept them fully informed with what I needed and could achieve and they have been able to give me extensions and support.

    I run a site called KALA Kids Against Lupus and Arthritis. We aim to explain Lupus and Arthritis in a very simple way and I write a blog as regularly to try and show people like your daughter what life can still be like with Lupus.

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