Book Suggestions

[samuelm7]

My sister, 53 years old, was just diagnosed with a bad case of Sjogren's Syndrome and a less established diagnosis of Primary Biliary Cirrhosis, at a Philadelphia hospital.  I'm interested in buying her some books on Sjogren's Syndrome that
focus on coping strategies and recommendations (i.e. drink plenty of water, use artificial tears, buy a humidifier for the house, etc.) and would welcome your book suggestions.

Thanks in advance for your replies. 

Samuel

[dbab]

Hi Samuel,

How wonderful that you are here for your sister.   Supporting her is such a great thing and she is very lucky to have you!

I have two books on Sjogren's.  The Sjogren's Handbook is a good book and it explains everything however it is mostly clinical and a lot of stuff involving the antibodies, etc.  The book that I like that has good things about coping is A Body Out of Balance. 

I know there are a few more out there.  If you scroll to the top of the page and click "Books/Reviews" you will see some more.  I'm sure others will be by to give their experiences and reviews on the books.

Welcome

[Bucky]

Hi Samuel,

Your sister is lucky to have such a caring brother! 

I have the two books that dbab suggested plus a few more.  I flip thru all of the books and find information that is helpful.  Two others I like are "The Sjogren's Syndrome Survival Guide" by Teri P. Rumpf, Ph.D. and "Positive Options for Sjogren's Syndrome" by Sue Dyson.

I also have another one called "Women and Autoimmune Disease The Mysterious Ways Your Body Betrays Itself" by Robert G. Lahita, M.d., Ph. D.

Also, if you are by chance ordering books for your sister on-line, IF you buy them thru Amazon.com there is a link on this site that gives back a small percentage to Sjogren's World. 

Your sister is more than welcome to come here and join in the forum discussions, e-pal's and live chats.    This site has a lot of great information.

Bucky

[Epson]

Hi Samuel,

Wow, I wish I would have had someone in my family as thoughtful as you are to your sister, that is actually the best medicine anyone with Sjogren's could ask for, not sympathy, just a little understanding, kudos to you.

The New Sjogren's Syndrome Handbook is my favorite book, but all other books mentioned by my comrades are also valuable tools.  You might want to read them after she is done with them and pass it on to other family members so everyone has an idea what is going on.  We Sjoggies don't look sick, but trust me, we don't feel well most of the time.

[Patze]

Hi Samuel,

Let me also welcome you to the SJS World!  Please do look around the board as there are tons of topics that your sister might be interested in, and oodles of information that might be useful to your sister.

Boy it's so great that your sister has a neat brother like you!  Wow, I'm glad that you're here trying to find help for her!!!!

Here are some of the books that I've read and like, "The Sjogren's Syndrome Survival Guide", "A Body Out of Balance: Understanding and Treating Sjogren's Syndrome", "Understanding Sjogren's Syndrome", and of course the standard "The New Sjogren's Syndrome Handbook".

Any of these books are pretty good, and they do have some good advice about Sjogren's.  

Again, welcome and let your sister know that she is more than welcome to visit.  And thanks for being a great brother!

Take care -

Patze

[samuelm7]

I wish to thank everyone who responded.  I'm going to purchase The New Sjogren's Syndrome Handbook;
The Sjogren's Syndrome Survival Guide; A Body Out Of Balance;  A Delicate Balance; and, Positive Options For Sjogren's Syndrome via your website links, so that Sjogren's World receives a contribution.

I empathize easily with my sister's health situation, as I myself was born with cerebral palsy 52 years ago.  In fact, I find that a congenital disability is easier to cope with since I was never able-bodied.  I think you are the ones who deserve kudos because the transition from being well to a diagnosis of Sjogren's Syndrome must be extremely stressful, if not outright terrifying.  (I have my own blog, which can be viewed at: http://www.illnessandcivilization.blogspot.com/)

My sister, Sara, has lost considerable weight due to Sjogren's Syndrome.  She complains that everything she eats has a metallic taste.  Her hepatologist is also treating her for a zinc deficiency.  Are these symptoms common?

Samuel