my daughter as got sle lupus and itp blood disorder - LUPUS UK


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my daughter as got sle lupus and itp blood disorder

pepsie profile image
13 Replies

plz can anyone tell me if there are any groups were i live so my daughter can go and meet people that also have lupus which i think would help her alot as she is very low inherself and keep self harming cos she cant cope with having lupus at the age of 24 and i think if i could find a group were she could go and see other people with the same as what she has got it could help her a lot more i live in warton preston lancs can anyone help with phone number to put me on track for her cos im getting soso worried about her and she needs more help on this lupus many thanks if anyone can help plz xxxxxx

13 Replies
copdber profile image

Sorry to hear about your daughter. This is a great site I can't help you with reguard to finding a group in your area but i'm sure someone else will be along soon and maybe they can help.

pepsie profile image
pepsie in reply to copdber

thankyou very much for getting back to me hun xxx

Sher78 profile image

I agree with copdber, get her 2 join this site. Each & every 1 of us on her will know exactly how she's feeling & can relate 2 what she's going thru. She is certainly not alone. I myself was diagnosed at 16 & I believe there r others on her who were diagnosed even younger so we can all relate & I promise, we will all do our very best 2 help her come 2 terms with this. If u click on the 'Directory' section at the top of the page & send a message 2 PAUL HOWARD (listed under ADMINS) he will b able 2 tell u where u're nearest group is.

pepsie profile image
pepsie in reply to Sher78

hi sher78 its is so so to good to here of so many nice people that have got the same illness cos my daughter seams to think that her life is going to end very soon and to here that you was diagnosed with this illness at the age of 16 has give me more hope and when i show my daughter all these i hope it will give her piece of mind and she can live a life with her illness

Danielle2419 profile image

So sorry to hear about the pain your daughter is in. As everyone has said get her to join on her theres loads of people her age and younger she can talk to which will help her im 18 myself and joining here has really shed some light on things im so glad i found this site its really helped me alot to cope with the way iam. i would love to talk to her myself to help her out. I dont no any groups in the arera though but as sher78 has said PAUL HOWARD will be happy to find someone in your area that can help.

pepsie profile image
pepsie in reply to Danielle2419

hi me to you thank you very much were are you from im in warton and my daughter is moving down to lytham st annes on sunday to be near me she in wales at the min a chat with you would be good when she comes down maybe have a good chat thank you very much xxx

pepsie profile image
pepsie in reply to Danielle2419

i will give you her number when she gets settled in blackpool it would help here alot thank you very very much xx

Danielle2419 profile image
Danielle2419 in reply to pepsie

That would be wonderful if she had email i could even talk to her that way if she likes iv got SLE and APS so would be happy to give advice or even help x

Danielle2419 profile image
Danielle2419 in reply to Danielle2419

I could sent you a personal message with my email so she can talk to me on that

MaryF profile image

My daughter has SLE Lupus and had a temporary wave of this when only five, she then went on to have Lupus and Hughes Sydrome - Antiphospholipid Syndrome - this disorder you describe can happen with Hughes Syndrome and a small percentage of people with Lupus can have both diseases, myself and my daughter have this profile. I am sure people on this site, will come forward from your area and there will be people nearer her age which she will find helpful. Mary F x

pepsie profile image
pepsie in reply to MaryF

aww thank you i think if i could take her to some groups maybe she would be better nowing that there are other people out there young and older than here and they are coping ok and the moment she not coping with her illness and thinks she hasnt got long i do hope i can find a group for her to go to and learn a bit more about it myself i thank all of you very much just being on her is helping me cope with this illness xxxx

Paul_Howard profile image

Hi. The North West group currently have active support groups working in Blackpool and district, Preston and district, Lancaster, Southport, Chester, Bury and South Cumbria. They also have groups meeting occasionally in Oldham and Warrington

You can contact them through their website here -

Orchidlily profile image

I also have SLE and ITP - there is an ITP Support Association which she could join, the address is 'Synehurste', Kimbolton Road, Bolnhurst, Beds. MK44 2EW. UK. Phone 0844 7770 559. Web: There is also htt://

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