What help

[Shaz22-69]

My daughter has Lupus SLE she is only 19. She has been signed off by her consultant are there any benefits she can get? She is an apprentice care worker.

[Paul_Howard Partner LUPUS UK]

Hi Shazz22-69,

You daughter may be eligible for Personal Independence Payments (PIP). It is possible to claim this whether you are in work or not and the payments will depend on her mobility and ability to care for herself.

If she is going to be out of work for at least six months then she may also be able to claim Employment and Support Allowance (ESA).

[misty14]

Hi Shaz22

Sorry to read your daughter has Lupus. Contact your local Citizens Advice Bureau who will advise you on the benefits Paul Howard has suggested. They will also help you fill the forms in. X

[Shaz22-69 in reply to misty14]

Hi Misty14 thanks for that I will see if I can get hold of someone today about it.

She broke down the other day because she has had enough of everything. I am 99% sure that she had a flare up at the weekend. The poor kid spent most of Saturday evening and night with her head stuck in a bucket and a whopping headache from hell lucky her BP fluctuated a little bit up and down but we tamed it. lol. We have to see her Rehumatolgy consultant today so we will see what he says then about the weekend. Anyway I will stop boring you with my troubles. Thanks again xxx

[misty14 in reply to Shaz22-69]

Hi Shazz

It's really tough your daughter has Lupus at 19 years of age!. There is a young group run by Lupus Uk. Paul Howard would give you details. How did the Rheumy visit go?. Good I hope . Keep any Consultant clinic letters for your benefit claims as well. Hope the CAB is helpful. X

[linda96]

Hi,

It took me quite a while to realise that having my head in a bucket is due to being photosensitive. When I was diagnosed at the hospital they told me that 60% of SLE patients are. Iv kept out of sunlight since and fortunately not had another bucket incident. (3 years now).

Best wishes

Linda96

[Zoezoe752]

Hi I am 24 and have had lupus since I was 6. I have just had a little girl 15 months ago but haven't been well enough to work for over 2 years it's very difficult to get benifits I have been rejected twice but wasn't prepared so I give u the advice have loads of info on lupus in your application write it on your daughters worst day and don't ever write Tht she can be better. Be prepared for an interview and keep your answers clear and lupus is very different person to person and as we look well it's difficult for ppl to believe we are so poorly thts the hardest thing I have found. Get your daughter to google the spoon theory it helps friends and family understand better I had to recently give it to my mother in law Tht kept saying I looked really well. She can message me if she wants I know how hard it is when all your friends are active and you can't be x