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Re: how do you deal with doctors & health pro's ???

PostPosted: Tue Jan 31, 2012 6:59 pm
by Ldyalb
Hey Jennifer

wrt Lupus - my Drs and I initially thought that was my problem as I have a malar rash. My malar rash is actually caused by a condition called Rosacea, which started in me at 14/15 so not much younger than you are now. Here's some info on Rosacea for you: ... ction.aspx ... 0AXlxJWLBQ

If you look at the pictures you can see that it looks just like the Lupus rash in some cases - it's often commonly mistaken as a sign of Lupus. Lupus is very hard for Drs to diagnose, sometimes people can have positive ANA results without it. That's why it's known as the 'disease with a thousand faces' as it looks like so many other illnesses, inc. Fibro. It's worth speaking to your GP to see if your rash could be caused by Rosacea. There are creams etc than can improve the redness. E45 lotion is a great start.

wrt School. They should be making some provisions for you to learn from home so that you can take your GCSEs this summer, unless you're in year 12 and have already taken them. The Equality Act applies to education - as a disabled teenager you have the right to accessible education. You may not be able to manage as much as before but it's really important to try and get as many qualifications as you can. There will be info and advice online about homeschooling. It might be worth your Mum signing up to Mumsnet or a similar forum - I know the ladies on Mumsnet have an excellent section about raising disabled and special needs children and may be able to advise her on how to get you sorted with some home studying. There will be other Mum's on there in a similar situation. Obviously it must be very worrying for her.

wrt DLA. DLA is paid to meet the extra costs incurred by having a disability and is paid in two components - care and mobility. There are two different rates of mobility payments, and three for care. You can get from £19.55 a week to £125 a week, depending on the severity of your care and/or mobility needs. ... G_10018702 ... G_10011925

You can download a PDF form from the second link. If you do decide to apply I would advise you to do the following;

- ring the DWP and request a hard copy of the forms - if you do this they will give you around 6-7 weeks to fill in the form, if you do send it back in time and they award you DLA they will back date your payments to the day you called them

- get help and advice from the CAB, DIAL or Welfare Rights - they will help you fill in the form. It's worth doing this as this will increase your chances of getting the benefit. Most people are turned down the first time they apply and they then have to appeal - if you do have to appeal you stand a greater chance of winning at appeal stage if you get help from CAB from day 1, than if you have just gone to them after sending the initial forms in yourself.

If you do get DLA then your Mum may potentially be able to claim Carers Allowance IF she has had to give up employment completely to care for you. The CAB can advise further.

We have a great section of the forum about Disability Benefits and Working with Fibro here:


I'd strongly advise you to have a look on there to get more info. I'd also advise you to see CAB soon, they can help advise you on your rights to education and on help you may be entitled to such as DLA etc.

Re: how do you deal with doctors & health pro's ???

PostPosted: Tue Jan 31, 2012 9:46 pm
by jenniferm202
Hey , school ; They totally understand my situation , I am in 5th year and I am hoping to return this August and repeat my 5th year as my body is to weak just now and I don't know how to function in school with my med's and stuff.

In school I have always be really confused because I get A's & 1's and good grade's in all of my subjects accept the one's that involve number's and I CANNOT REMEMBER ANYTHING :oops: :cry: In other subjects I forget too but those are the worst 'those' being maths & computing :(

DLA ; my mum's sorting that now as I suggested it to her when you wrote a reply , thank you !

Thank you everyone who is offering me advice ! :grouphug: :hugs:

I just feel really alone right now , and you's are really helping me , even if it is over a laptop :needhug:

Re: how do you deal with doctors & health pro's ???

PostPosted: Tue Jan 31, 2012 11:12 pm
by shelleydwales
Hugs for you huny,you will get the diagnosis it just seems to take forever with waiting lists,and tests etc. Stay strong and positive,whenever you need some support or a chat we are here ok ;-) xxx

Sent from my X10i using Tapatalk

Re: how do you deal with doctors & health pro's ???

PostPosted: Tue Jan 31, 2012 11:28 pm
by Ldyalb
Ah just seen you're in Scotland and I know the Scottish education system is slightly different to the English one. Sounds like your 5th year is our year 11, at the end of which GCSE exams are taken. Either way - with Scotland still in the Union atm you're definitely covered under the Equality Act 2010 :-)

I was the same at school, was great at most subjects (except maths, pe, music, art and ICT, oh and Textiles... hmm not looking so good now lol) but I was good at English Lit, English Lang, Geography, History, Religious Studies, Latin, Classical Civilisation, French, German, Food Tech, Irrisistant Materials, Citizenship etc. I went to the University of Nottingham which is a UK Top 10 Uni (and World Top 75 but I'm modest me :-P ) and I got a 2.1 honours degree. But now my brain is turning to mush. I spent 3 years studying European Politics and I still don't understand how the European Union works :facepalm:

That's why it's so important to keep studying as much as possible now, you want to be able to leave school with some decent GCSEs under your belt. Hopefully you can go back to school next year and you can get a good plan put in place about how to cope. Even if you have to drop a few subjects it's worth doing - better to get 6 or 7 really good grades, than 10 or 11 which aren't as good because you tried to do too much. There's a lady on here who got her degree with Fibro and now has a great graduate job, she doesn't post very often but I'm in contact with her on Facebook. She posts in groups for Fibro; I don't use them much as I keep my Fibro life seperate from my non-Fibro life. So with the right help and support hopefully you can go back to school and study.

If the Connexions service is in Scotland it's worth getting in contact with them - they help young people under the age of 19 with all sorts of issues around careers, education, housing etc.

This is a link to one of their English sites, if you google them with Glasgow hopefully it'll tell you if they are in Scotland, or whether they're just an English thing.

Glad your Mum's looking into DLA for you, it should provide a big help, especially now things like EMA have been cut for young people.