The Lupus Encyclopedia

[Barnclown]

Look what the Easter Bunny brought me!

Last week during a discussion here about lupus, sweating & the autonomic  system, George posted a great excerpt from The Lupus  Encyclopedia on the subject...so I went online to find out more about this volume.  What I learned impressed me enough to order the printed version, although that meant emptying my piggy bank (the kindle version from Amazon is more affordable, but I like printed reference books).  

So, yesterday afternoon I read the foreword, preface + a few chapters including chapter 44: The Lupus Secrets Checklist, in which the author (a lupus expert rheumatologist named Donald Thomas) summarises his top tips....he writes that "most physicians & nurses don't have time to go over these with patients, even though they are important"...and my feeling is that this chapter alone makes this book worth owning.  And everything I've read in it so far makes me sorry I haven't had it by my side for years...but, then, I couldn't have: cause it was only published in 2014 by the Johns Hopkins Press....so it's nearly bang up to date

This book is written from an American perspective, but most of what I've read fits with my experience as a lupus patient here.  The style is humane, deeply thoughful, and totally accessible...not dry and academic at all...although it's full of solid professionalism & expertise....good sound information displayed in practical formats.

I'd love to meet Dr Thomas & shake his hand....I get the impression he is one of those rare medics: a really good guy & a True Detective

So, have been mentally thanking our George @ Lupus UK for turning me onto this book...it is available from the Lupus UK website, but that closed over the Bank Holiday...while Amazon would deliver my copy yesterday..it's now joining my 2 fav references (Wallace's books on Lupus & Sjogrens) on the shelf

Wishing everyone a happy holiday

🍀🍀🍀🍀  coco

[cuttysark]

I have the two Wallace books on Lupus and Sjogrens and they are both fantastic .

Thanks for letting us know how good this one is too. Like you I like to have reference books in printed format rather than kindle.

It is such a comfort to hear a positive perspective from different medics especially for those of us still struggling in "no man's Land".

I am fortunate now to have a great Rheumy but these books enable us to go out there with ammunition to reach an answer at last!

Have a good Easter Monday, BC, lovely sunny day here!!

C xx

[Barnclown in reply to cuttysark]

Glad you've got sun!  We've had gales & rain all night...only stopped about an hour ago...and still looks threatening...

You're so right: my reference books are HUGE confidence boosters!

If you to get the Encyclopedia, I'd love to know what you think of it!

😘🍀

[Bebe76]

I have this as well, it is a fantastic resource. I also have the Wallace book on lupus. I will have to check out his book about Sjogren''s,  I didn't know there was one! 

[Barnclown in reply to Bebe76]

Am SO GLAD the Encyclopedia has been a good buy!  

In some ways, I feel that Wallace's sjogrens book is even stronger in terms of solid detail than his lupus book, but both have earned their worth many times over during the 5-6 years since my lupus was recognised & daily  treatment begun

👍🍀

[Bebe76 in reply to Barnclown]

  The Encyclopedia is very thorough and has been a great resource for me. It is a bit expensive, and can be a bit intimidating because it is about 900 pages, however it is well worth it! It gives information focusing on the patient's point of view - it gives practical advice as well as being educational.

[Barnclown in reply to Bebe76]

I'm sorry: had just edited my reply cause realised you'd said you do have the Encyclopedia.  It's so good to know what you make of it: once I started to read the introductory sections, I felt so impressed by Thomas's humanity that the bulk of those 900pages stopped seeming quite so intimidating...it seems to me that this volume is a sort of labor of love: undertaken by a medic is truly devoted to understanding & helping patients

[Bebe76 in reply to Barnclown]

Just edited mine too

Yes, I feel like this book is a result of a lifetime of getting to know the diseases as well as his patients. If only we could all have a consultant with such knowledge and understanding.

[Barnclown in reply to Bebe76]

Exactly...and the time Thomas put into producing this must've been monumental...that  degree of devotion/commitment to communicating this amount of quality info is truly rare...my impression is that putting the book together became an obsession.  Well, I'm all for that type of obsession🌟👍👏

[Barnclown]

Just discovered Thomas runs a Facebook page where he posts Lupus info updates etc:

facebook.com/LupusEncyclopedia 

[Paul_Howard Partner LUPUS UK]

We love this book in the LUPUS UK office. It is often my go-to book when I need to provide somebody with additional information. For anybody else interested in ordering it, you can find details about how to do so at lupusuk.org.uk/shop/#!/Book...

[Barnclown in reply to Paul_Howard]

It's easy to imagine how useful this book is to you all!  What a marvellous reference Thomas has created.  Am eternally grateful to George for mentioning the Encyclopedia last week!

[chrisj]

Bit pricey for my purse but I did find a used copy of "Talking about Lupus" on amazon with just postage to pay so I've ordered that one

[Barnclown in reply to chrisj]

That's a good book too!

[chrisj]

Thanks Barnclown. I dont usually buy books about Lupus but so cheap it would have been silly not to