A BIG THANK YOU to Lupus Uk: GRRRREAT article on lupus in my local paper!

This morning was reading the Bury Free Press published yesterday....and jumped out of my chair when got to p 127 and found a FAB full page piece about lupus...one of THE best public info pieces on lupus I've read yet

So, just want to thank the team responsible for getting this into the BFP!

Brilliant stuff, greatly appreciated!

5 Replies

  • Barnclown...anyway there is a site to read this on? I am curious...

  • Good question! The Bury Free press is published by Angla Newspapers Ltd in Bury St Edmunds Suffolk England. I guess you might find this article if you went online: The article is on p127 in the Health Section of the fri October 31 edition. The website is buryfreepress.co.uk

    I suspect (& hope) this article has also been printed in other local uk newspapers.....during october, which was lupus awareness month. Perhaps someone at lupus uk could post the article here or on their website: perhaps it's here or there already!?

    after I submitted this thank you post, my husband read the article. He is experienced in unusual chronic autoimmune illness due to both him & his sister having Crohn's diagnosed in early life.....he has always been a conscientious compliant patient, through decades on steroids + several bouts of major surgery. His sister has an illeostomy & major gyn complications due to her version of crohns. We're all in our 60s. So you'd think they'd be relatively quick on the uptake, at understanding SLE (especially cause my version of lupus is infant onset so they've had to live through 30 years of my version of autoimmune multisystem illness progressing)

    But, even so, it's taken him 4 years to get his head around lupus. And after he read this article he said:

    uh oh, that reads sort of as if lupus symptoms are "just what everybody gets"....maybe there isn't quite enough emphasis on the serious significance of the progressive debilitation that attends cases like yours (ie mine - in which daily systemic lupus meds aren't given until decades after the lupus process began to attack my body pretty much all over). And this means people could skim the article and mistakenly come away underestimating the 'living with lupus experience'. And crohns patients experience similar comprehension problems: much of crohns can be interpreted as "simply" IBS, like loads of people deal with as a matter of course. But crohns is much more than "just" that......etc etc

    We had quite a good conversation

    And I admit, he has a point....especially cause the article features huge photos of beautiful attractive women: who could be anyone with or without lupus, e.g. one is yawning & looks tired, but not exactly totally miserable. The other woman is beautiful, attractively composed at a desk calmly reading with her hand on the back of her neck

    It can only be vvvvv hard to settle on the balance of emphasis in these articles....and I stand by my initial reaction to this piece: it is a great introduction to lupus, and more in depth than others! But, hmmm, could a follow up piece giving more of the tougher "truth" about the mainly relentless grimness of life with lupus help clarify things in the heads of anyone in the general public who can be bothered to read it ....indeed, we went through a similar arc getting our heads around lupus: first reading material emphasising the general aspects & implications this article covers vvvv well...then, as years passed, we were refining & enlarging our understanding as we read more widely, discussed my condition with my drs and met others living with lupus. After all, lupus can & does relapse & remit, but even in remission don't many of us live with a significant degree of dread....lifestyle managing a gogo.....waiting....and often still reliant on heavy duty prescription meds even when "in remission" or diagnosed with "mild" lupus

    vvvvv hard to get everything across in one blast in one article!

    ARGH, I have gone on & on....sorry!

    Hope you can find it online

    And again: many thanks to all at lupus uk who are working hard to raise public awareness of lupus....never an easy job!

  • Thanks Barnclown...will take a look. My sister, a pediatrician, keeps insisting she believes it's just aging. Arrg! I don't talk to her anymore about my symptoms. Hate being dismissed. Especially since I am having a terrible time breathing, can't catch my breath, and my back hurts along with it. Hope yup and your family are coping ok.

  • Really interesting thank you : )

  • you're totally welcome roromatic.....how are you? do you have a date for your next rheumatology appt? hope you're managing as ok as poss

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