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
Thanks coco! Was written succinctly and with a patient focus wasn't it. Good find 👏🏼🕵🏼
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👯
Why am I not surprised that you have a brainy brother , a Yale graduate 😜!
PM
🌺
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
😉😘🦄🌷
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 .
YES! 👍 A VVVVV HUMANE view of lupus from THE perspectives that matter most to us! 😘🍀
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.
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
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.
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!
Hopefully it will continue at least until your care plan is updated and they agree. Good for you.
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.
Lupus awareness/fundraising evening
Lupus Awareness
