RE: does anyone no of a helpline/crisis line in the uk

[Guest guest]

Hi Jayne,

I am Ruth in Cambridgeshire, I battle daily with this awful disease and like

you am trying to ensure benefits will be given as I am unable to work. I have

found this site amazingly helpful and supportive, but there does seem to be only

a few of us in the Uk.

I am only to happy to chat to you as I totally understand the feeling of

loneliness within the disease and a lack of understanding from many.

Love Ruth UK x

i have many ongoing problems with benefits etc and concerns about my future

with stills, i have no one to talk who really understands where im coming from

or to even just get advice so wondered if there was a uk helpline or support

group ??..... many thanks for taking the time to read

jayne (england)

[Guest guest]

Hi Ruth,

Thankyou for your message, its nice to hear from someone in the uk, (not that im

pleased you have this awful disease) . I live in Worcestershire and am battling

terribly with benefits i have a tribunal to attend AGAIN, i'm not sure how you

have found it but whenever im asked to describe how my illness affects me i get

looked at as though i am crazy, and i do agree that some symptoms are bizarre

and they seem to want specific symptoms and length of them, theres just not

enough information to give them to research the illness so i wouldnt have to try

and explain it all. My last visit to my Drs i found myself laughing as the |Dr

logged onto google too see if he could come up with any medication ideas .....

sorry for ranting i just get so angry and frustrated with the lack of knowledge

.........

Jayne UK

________________________________

To: stillsdisease

Sent: Tue, 22 February, 2011 14:19:48

Subject: RE: does anyone no of a helpline/crisis line in the uk

Hi Jayne,

I am Ruth in Cambridgeshire, I battle daily with this awful disease and like

you am trying to ensure benefits will be given as I am unable to work. I have

found this site amazingly helpful and supportive, but there does seem to be only

a few of us in the Uk.

I am only to happy to chat to you as I totally understand the feeling of

loneliness within the disease and a lack of understanding from many.

Love Ruth UK x

i have many ongoing problems with benefits etc and concerns about my future with

stills, i have no one to talk who really understands where im coming from or to

even just get advice so wondered if there was a uk helpline or support group

??..... many thanks for taking the time to read

jayne (england)

[Guest guest]

 Jayne

 welcome and boy do many of us know and feel what your saying. I do not know

about a number to call across the pond there but one good thing about this sight

is some one is always here or very shortly after a post being we are from every

were . This place helped me to keep my sanity that is if I ever had any to start

with when I first became ill with stills and then later when I had some major

life changes because of it sad part 90% of them were not stills related as in

health but were cause by having stills and being married to some one that could

not deal with it. any hoot if there is no phone number there is always us here

so vent ask or even cry if need be as I can tell you most likely some one has

gone threw something close to what your dealing with. we may not know exactly

how you feel but I bet we can get close to it so now that you broke the ice

posting here at our family lets get to know you better and you us

hugs

The  Redneck  

Marty G     

 

  " I am having an out of money experience. "

" No man's life, liberty, or property is safe while the legislature is in

session. "

...............................Mark Twain (1866)

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

Welcome Jayne,

There are acutally a few members in Europe and England. Some are off doing

things but perhaps will pop up and say welcome. We have free informational

brochures that you may get by emailing your postal address to

oldgoat3782knology.net and requesting some. Bob will be happy to send you some.

It's part of the foundation work. You can pass them out to whomever might

benefit from the information about Stills disease. Perhaps the councel would

benefit from the information as well?

Welcome to our family here and we look forward to getting to know you better.

My nickname is and I was diagnosed at 19, 30 some years ago now.

Smiles to you,

[Guest guest]

Hello Jayne,

Carole in Surrey here.

You've found your helpline/support group....there's always someone to listen to

any problems on this site.

I don't post often but read all the postings and feel that I always have

understanding friends in this group if I should need them....I know you'll soon

feel the same.

Carole(UK)

________________________________

To: Stillsdisease

Sent: Tuesday, 22 February, 2011 22:13:55

Subject: does anyone no of a helpline/crisis line in the uk

 

hiya all

this is my first post on here so hope it is done correctly, i am 40 yrs old and

was first diagnosed with adult on-set stills in oct 2008,

i have many ongoing problems with benefits etc and concerns about my future with

stills, i have no one to talk who really understands where im coming from or to

even just get advice so wondered if there was a uk helpline or support group

??..... many thanks for taking the time to read

jayne (england)

[Guest guest]

Hi Jane

There isn't a helpline for stills in the U.K. but I have found the one open

to everyone has been very helpful and a great support to me. It is a

different system regarding financial help etc. and the only suggestion that

I would make was contact the

Citizens advice bureau as I think they have numbers of all the

organizations that you may need and where they are.

I also found when I needed medication where you have to get permission from

the NHS, they would finance the drug if I said I had Rheumatoid Arthritis

but would not let me have it for Stills - apparently because there a lot of

people suffering from RA and the drug was successful they would grant it but

as not a lot of people know about Stills so they don't know how much the

drug is helping they won't prescribe it. I just thought I would mention it

in case you should need one of these medications.

I do hope that you can get your problems solved soon.

Take care

Joan U.K.