Lupus

My son has recently been diagnosed with discoid lupus and has been started on anti-malaria tablets. I have been very upset and been trying to remain positive but very scared for him and the future now. Just so scared of it becoming systemic and wondered if anyone could write any stories and how they get on living with discoid lupus or any parent out there I could talk to? His father isnt on the scene and I have no parent so feel very alone, when I have digested the news Im sure I will cope better! Many thanks

14 Replies

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  • Hi angel298, I have SLE but did develop discoid Lupus for a while which presented itself with red itchy blotches over my arms and legs. I can only say that they managed to control mine and it eventually disappeared. Try not to get too panicky as there are different levels with any illness and Lupus can be managed. The prognosis is much better than historically.

    I don't think anyone can wave a magic wand - we all wish that but there is no point worrying about things that have and may not happen.

    If you show calmness to your son it will help him feel calmer about his condition. We cannot stop things happening to us but we can influence how we deal with them.

    Hope this offers some comfort

  • Thanks you your message, if you would like to stay in touch outside this site, that would be good, if not good luck x

  • Hi .. My son is 15 and was diagnosed with SLE 18 months ago .How old is your son ? It is a roller coaster of emotions and an ongoing time of adjusting . I know exactly how you are feeling , the worry never goes but I have found support through family , friends ,lupus UK and talking to other parents in similar situations , as they are the real people who know exactly what you are going through . If you want to chat send me a message . Hope your Son is ok . Take care x

  • Thanks for your message, can we chat on somewhere apart from here? Where do you live? x

  • Hi I live on the south coast .. You can send me a personal message on here then I can give you other contact details if you want x

  • Thank you for your comments, Im really trying to be positive but my mum side is taking over! I get times when I have to shut it out and times when I just cry, I think its the shock of finding out something like that about your kids who you want to protect. My son is 26, I havent got any family apart from a sister, and got a younger daughter who Im trying to keep it from. I could really do with staying in touch with parent etc, I think with this disease its the fear of not knowing and cant be cured. At the moment its a diagnosis of discoid lupus and say it has a 10% chance of spreading, its the knowledge that it could that has made me feel like this.

  • I am happy to be a Facebook friend. I have lupus myself but have a son with other problems. Find me on Facebook x

  • Thank you I will x

  • Hi,

    I was dxd with discoid lupus, age 13, I am now 73 and going strong!!! Good wishes to your son, I'm sure treatment is even better now .

    The important things I found even as a teenager was plenty of sunscreen (spf 50) and above all try not to stress. Hope this helps.

  • Thank you for your message, have you not had any systemic symptoms? What else have you done to cope? Knowing that has made me feel better, did any of the tablets you took affect your eyes, they have started my son on Hydroxchloriquine x

  • Hi.

    If you'd like to speak to other parents who have children with lupus I can help to put you in touch with some. If you send me a private message or email paul@lupusuk.org.uk then I will give you details of one of our Trustees who works very closely with families affected by lupus.

  • Hi Paul, I messaged on here a while ago, are there any support groups near herefordshire or anything else please?

  • Hi angle298,

    Depending where you are in herefordshire, you closest support group could be;

    Western Lupus Group - westernlupus.org.uk/

    West Midlands Lupus Group - westmidlandslupus.co.uk/ or

    South Wales Lupus Group - southwaleslupusgroup.co.uk/

  • Thanks Ill do that x

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