NEW YALE UNIVERSITY MAG lupus awareness month art... - LUPUS UK

LUPUS UK

31,744 members28,102 posts

NEW YALE UNIVERSITY MAG lupus awareness month article

Barnclown profile image
15 Replies

Yale University is tops in the USA.  Researchers there have been leading the way in studying Erythromelalgia for many years, bringing about a better international understanding of this rare autoimmune condition, which affects some of us.

Now, this new article 'Listening to Lupus' explains Yale Rheumatology's take on Lupus:

news.yale.edu/2016/05/04/li...

I'd love to know what you think of this article

🍀🍀 coco

Written by
Barnclown profile image
Barnclown
To view profiles and participate in discussions please or .
Read more about...
15 Replies
Penelope-Mary profile image
Penelope-Mary

Thanks coco! Was written succinctly and with a patient focus wasn't it. Good find 👏🏼🕵🏼

Barnclown profile image
Barnclown in reply to Penelope-Mary

Glad you like it PM... & their interdisciplinary approach is great...and it's the sort of article to share with family & friends who just don't 'get' what lupus is about..e.g. my bother in Vermont is a Yale graduate, a quite brainy guy.  He loves his Yale mags and often sends me educational links to articles...so, this morning I had his email with the link to this piece about lupus for the USA lupus awareness month of May...when I read the article I thought: oh my gosh, so, if he has actually READ & processed the info in this article, he should now (FINALLY) better understand what my life with lupus is like....i'll see about that when we next talk 😉 XO👯

Penelope-Mary profile image
Penelope-Mary in reply to Barnclown

Why am I not surprised that you have a brainy brother , a Yale graduate 😜!

PM

🌺

Barnclown profile image
Barnclown in reply to Penelope-Mary

I did ask if he felt he'd learned much from the article...his reply:

Yes. I did read it. Quickly. There was a lot of

stuff in it that you had already told me.

Not the treatments, though.

 GOOD OLD BIG BRO: trying his best for little sis

😉😘🦄🌷

littleeffie profile image
littleeffie

Thanks coco

I actually found the sentence "Lupus is a very challenging disease to treat" quite emotive.It not only emphasises the struggle we as sufferers have but also the difficulties that our medics are up against trying to help us.

It's good to read all this amazing info you find as has a sort of grounding effect.Reminds us all that we are not alone,not forgotten and that people do care enough to try and improve the lives of patients like us .

Barnclown profile image
Barnclown in reply to littleeffie

YES!  👍 A VVVVV HUMANE view of lupus from THE perspectives that matter most to us!  😘🍀

puffyface profile image
puffyface

Thank you Coco. It was just what I needed to read today. Medics really thinking about this horrible disease from the patients perspective and acknowledging that it is incredibly difficult to treat. 

Barnclown profile image
Barnclown in reply to puffyface

 So glad it's hit the spot puffy 👏👏👏👏🍀🍀🍀🍀

KarenC profile image
KarenC

Also what I needed to read today, suffering quite badly at the moment so articles like this do help. Thank you coco, I am convinced you have some way of knowing what we all need lol. Very much appreciated as always xxx

Barnclown profile image
Barnclown in reply to KarenC

😉😘🍀🌷

johare profile image
johare

Very interesting. A multidisciplinary approach that is often missing here. Yes it is challenging to diagnose because of vague and a range of symptoms but as "House" always said" its never Lupus" so doctors don't look for it. Keep them coming please.

Barnclown profile image
Barnclown in reply to johare

OH HOW I MISS DR HOUSE....since January I've suddenly found myself well & truly locked into an NHS multidisciplinary approach to my immune dysfunction/connective tissue disorder/Dysautonomia...I keep pinching myself...feeling like Alice...so far I am clearly benefiting for this approach...and every cell in my bod rebels against the fact this approach is often missing here...🤔how long will I be so lucky as to be treated this way...watch this space!  

johare profile image
johare in reply to Barnclown

Hopefully it will continue at least until your care plan is updated and they agree. Good for you.

Paloma25 profile image
Paloma25

Thanks, Coco. I like their broad approach, and combination of putting people in touch with care managing nurse practitioners, as well as specialists. We don't have much of that in the US - mainly 15 minute appointments with busy doctors. Thanks for all your great posts.

Barnclown profile image
Barnclown in reply to Paloma25

Yes, they seem so enlightened. Just wish this approach was contagious 😉🍀

You may also like...

October is Lupus Awareness Month - a blog update from LUPUS UK's CEO

Today is the start of Lupus Awareness Month in the UK. I've written a blog article to help kick-off...

LUPUS UK is seeking a case study for a Lupus Awareness Month press release

in the UK •Have a diagnosis of systemic lupus or discoid lupus •Have experienced difficulty/a...

🙋🏼 Hello my Lovelies: here’s a special video for Lupus Awareness Month

with lupus. Shaista has posted this on YouTube. It’s also posted on the website of our Lupus UK...

LUPUS UK Community Forum Research Papers - Lupus Awareness Month

with lupus and related systemic autoimmune diseases\\" -...

National radio awareness of Lupus

hrs in http://www.bbc.co.uk/programmes/b01pmd35 Pity the did not mention the chartity Lupus UK...