i,m new to this site,i myself do not have lupus but my beautiful mother who i lost recently was diagnosed with the condition many years ago did.She battled on for years never complaining and helping people along the way,she was diagnosed with cancer shortly after she found out she had lupus,i,ve recently organised and took part in a sponsored walk for lupus uk and we raised a little over two thousand pounds for the charity,i,ve joined this site because i would like to find out more about the condition.

16 Replies

  • I am sorry to hear of your loss, I know how that feels as I lost my Mom Two and a half years ago to lung cancer. I take my hat of to you for the interest that you are still showing with regards to the Lupus, if only the world had more understanding and caring people as yourself. I suffer from Discoid Lupus, ME/CFS, Fibromyalgia, Migraines and Restless Leg Syndrome, all of which I believe are Lupus related. If you have any questions please feel free to ask.

  • if you don,t mind me asking did your lupus come first and as a result you ended up with all your other health problems

  • Hi there,

    I also do not have lupus but lost my sister a few months ago to the illness. I am currently organising a sponsored walk and have already raised over £1000 for LUPUS UK.

    I wish my sister had had this site many months ago as reading most of the posts I can relate to what people are saying because she suffered badly with the illness, mainly with depression.

    I also joined to learn more about lupus. Raising awareness of the illness is my main aim, I only wish I'd done it sooner.

  • my feelings exactly to raise awareness and i too wish i,d done it a lot sooner,i did,nt and still don,t know much about lupus until recently when i was going through some of mum,s things and found a diary she had kept since all her health problems started and then finding out she had lupus sarcoidosis and chronic lymphoma.Reading it was very upseting but very enlightning,it may sound silly to some people but i,ve decided to spend as much of my spare time while i am fit enough to raise as much money as i can for lupus uk,cancer research and st catherines hospice the three charities my mum helped as much as she could

  • Hi Staypositive,

    That is some fantastic fundraising...WELL DONE. Thank you. I hope you have a wonderful time doing yoru sponsored walk, you'll have to let us all know how you get on.

  • Hi catb18,

    Welcome to the site. I hope that you find it a useful place for information and support. There are definitely loads of helpful and friendly people on here.

    Well done on your fundraising! That really is fantastic.Did you have a good time at the sponsored walk?

    I just wanted to say that here at National Office we have loads of information leaflets and books. If you want any of them to read then I would be more than happy to send them to you. Just let me know.

  • Hi Paul_Howard

    We had an absolutely fantastic time doing the walk we walked twenty miles from blackpool to preston weather was absolutely horrendous poured down all day i ended up with a cold and serious chest infection but as far as i,m concerned it was well worth it,doing another one in march for lupus half marathon this time which i,m looking forward to.

  • just to add i,m just sorry my mum did,nt manage to find this site before she sadly passed away,you all would have helped her through some difficult times of which she had plenty of,i did,nt know up until recently when i,d found a diary she kept for many years that she found it difficult to talk about her illnesses even with her family.Hard to believe she,d had lupus for 41 years before she was diagnosed,very upsetting time at the moment in fact i,m crying as i,m typing this,one consulation is she went in her sleep.

  • I've just joined this site as my mum has Lupus amongst other things, someone replied 2 me who had lupus and thought it hard on her daughter who has 2 watch her suffer, which made me think how I'd feel in her shoes, it would b exactly the same as I felt when I was receiving radiotherapy that I was the 1 causing her pain and would keep it 2 myself rather than hurt the closest 2 me by discussing it with her or any close family member, the fact your mum didn't talk 2 family could well b she didn't want 2 cause you any more pain than she could see you already suffering, her diary prob her release as she wasn't talking about it. I'm so sorry for your loss, I think she was trying 2 make it easier 4 you in her own way

  • Just received our T-shirts and sponsor forms, very exciting! Now to get them out to the 50 people I've got to join the walk, that'll be fun!

    The walk will take place on Sunday 6th November so hoping the weather will stay dry. I will let you know how we get on. So far we've raised another £250 on the justgiving page I've set up in my sisters memory. This may be a good idea for you too Catb18, you can donate to a number of charities if you like but we're donating everything to LUPUS UK.

    Now to try and concentrate on the uni work for a bit as my final year has just begun!

  • That really is fantastic. Is the event open to the public? If so I can promote it via our facebook page if you'd like? If you want me to then just send me a private message with all the details and a contact email incase anybody needed any more details.

    I hope you have a fantastic time and best of luck with your final year at university.

  • Hi stay positive

    i opened a just giving account in memory of my late mum that,s how we managed to raise just over two thousand there was only ten people that took part in my walk,doing another one in march for lupus this time organised my my eldest brother

  • It's not open to the public really hun, I've done it memory of my sister for all those who knew her as she only died 2 months ago :( Wanted to help people with the grieving process whilst raising awareness of the illness (& money). Thanks though Paul x

  • That's fine. I just thought I would check. I'm very sorry about your loss. I do hope you all have a great day. Take care.

  • Well good luck Catb18 I've found that you've just got to mither people and make them realise what a good cause it really is. Afterall heaven forbid one day it could be there loved one that needs the help.x

  • yh staypositive i absolutely agree,i noticed your doing your final year at uni good luck with that x

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