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As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

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Picture of Topic Friends and family


Topic Friends and family

For anyone supporting someone else with cancer

  • 156 conversations

My best friend has HLH

Started by Anonymous on 10 August 2016 at 17:39

My best friend has had HLH for two years now. I don't know how many people will know what that is, but I know it is a condition which Maggie's offers support for. She is about to take her fourth year out of uni (one year she took out prior to getting HLH for mental health issues) and I don't know how to make her feel better. She has had a severe flare of GVHD following stem cell treatment and she has also got diabetes from the treatment. Life is so rubbish for her, it's just one thing after another, and I don't know what to say to her at all. 

Comments (1)

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  • Picture of Robyn
    From Robyn  
    11 August 2016 at 10:09

    For those wondering HLH stands for Hemophagocytic Lymphohistiocytosis ( I had to look up how to spell it )

    It is a rare condition affecting the immune system where some types of white blood cells attack other blood cells.  It isn’t a type of cancer however many symptoms/treatments are similar so this distinction is a bit academic.

    It sounds as if you are already doing a lot by being there, whether physically or at the end of a phone. Don’t underestimate the support that you offer to your friend by just listening to her even when you can’t fix things for her. There is no ‘right’ thing to say however a start can be to say to your friend that you don’t know what to say and that  there for her however she wants to manage her situation.  At different times she may appreciate having someone she can talk to honestly about how she feels or to have some distraction by talking about something everyday…..
    It can be exhausting emotionally and physically seeing someone you care about so unwell and it is important to look after yourself too.
    If you would like to message me privately we can talk in more detail about your situation and the support available for you and your friend
    Best wishes

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