Daughter recently diagnosed!!

Hello all you lovely people, My daughter has recently been diagnosed with lupus, she is 12!

It seems that she is in the less serious category. We are in france and are receiving what I think is fantastic follow-up care from the children's hospital in Toulouse. I would love to hear from anyone who has a child with Lupus...I am desperately trying not to over analyse every ailment she has. She is very active, does loads of sport and is a good student, but has had periods of extreme fatigue, poorly stomach and poor appetite. Thank you in advance

4 Replies

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  • Hi Pouy, sorry I cant help with you with the young person but really know you will get lots of support and help from the group, your Daughter seems to be doing well and it sounds as though you are getting good treatment fatigue is one of the worse things about Lupus keep logging iin and welcome

  • I have had lupus from a very early age but wasn't diagnosed until I was 16 so I can kind of relate. Her own body is the best indication on how she's feeling but obviously as she's so young, she may not be that able 2 read the signs. Just get her 2 become more aware of how she's feeling and make sure she keeps up her fluids & rest frequently. It's quite possible that she can carry on as normal with ease but just suffer with occasional bouts of fatigue etc. Good luck :0)

  • Thank you for your replies. I think she is accepting that sometimes she has to slow down a bit, but it doesn't come easy, plus she is very angry with the whole thing, especially the photosensitivity and needing to stay protected from or out of the sun. We have a follow-up appointment next week after having gone through loads of tests, and then check-ups every three months. At least she can have a bit of shopping therapy in Toulouse afterwards!!

  • I just wanted to jump in and say that I was diagnosed at 12, like your daughter, and after a year or so of treatment went into remission completely until the age of 35, when I flared post-pregnancy. I know my parents would have loved to have this community (and all the resources of the internet) to draw upon and I have found this group very helpful over the past few years. I worried as a kid that I would be sick all my life and I clearly had lots of great years without any issues at all! I hope her treatment goes well and I hope you find the support you need through groups like this. Best of luck.

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