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Community Blog

Thoughts and personal experiences

MaryF

For those in the UK

Posted by MaryF
10 May 2012

Hello there: xx

The difficulties of having autoimmune disease either one or several

Posted by MaryF ADMIN 0 minutes agoEdit | Delete
I have had some truly great care over my life time, but some that has been equally appalling, partly down to lack of ...

MaryF

Great news about The National Migraine Centre

Posted by MaryF
6 Apr 2012

The National Migraine Centre is now live as a forum on HealthUnlocked... so for those of you who have friends and relatives with awful headaches/migraines, not only is the actual centre good - (used it myself once), but now the forum is live, and people starting to join. They were great with ...

NinaPWA

New here!!

Posted by NinaPWA
5 Apr 2012

I was diagnosed with Sjogrens Syndrome about 30 years ago, secondary to a diagnosis of Rheumatoid Arthritis some 7 years earlier. When my contacts became uncomfortable, no one could tell me whether this was from all the meds I was taking, or some how connected to the RA. I didnt get the ...

MaryF

For those of us on here from UK or who friends in UK

Posted by MaryF
31 Mar 2012

have had some excellent care and at times some not so good.

Posted by MaryF 0 minutes agoEdit | Delete
I personally hate the culture of formal complaint in the NHS, whether a patient or a member of medical staff: Complain and a very expensive and money wasting formal ...

MaryF

Good News

Posted by MaryF
27 Mar 2012

For those of you in the UK who may have migraine problems... or who want a forum... The National Migraine Centre based in London, no referral needed, will nave a forum on HealthUnlocked. They are a great charity and have helped many a person solve their headaches.


...

Butterfly54

VENUS WILLIAMS WINS

Posted by Butterfly54
26 Mar 2012

Well done Venus for winning a tennis match last week.

Not sure where as not into sport but heard it on news.I know she will have had all the money going to help her with Sjogrens.But ut doe`s give younger sufferers hope.
xx

MaryF

For those of you in the UK, a very valid petition

Posted by MaryF
22 Mar 2012

I have had some excellent care and also some downright awful care, for myself and my children, due to having 5 autoimmune conditions. This petition, started by the original Staffordshire Whistleblower, is a fairer way forward both for patients and medics, anything which saves lives, dignity, ...

grahamb

Do you use a computer much? If so, you should definitely invest in an anti-glare filter to place over your screen.

Posted by grahamb
18 Mar 2012

My dry eye has improved a lot since I did this, although I didn't quite find the right sized filter and ended up with a square one instead of widescreen. Te trick is to measure the diagonal. These filters are supposed to block about 95% of UV radiation from the monitor, so it's well ...

Giovanna

Newly Diagnosed

Posted by Giovanna
17 Mar 2012

Have been suffering from this condition for a very long time and only recently been diagnosed a few weeks ago by a Rhumatologist. Looking for more information and support regarding this condition.

Butterfly54

Diagnosed January 2012 would be nice to hear from Someone

Posted by Butterfly54
11 Mar 2012

would be nice to hear from someone

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Views expressed are those of individuals and not of The Australian Sjögren's Syndrome Association
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