Friday, January 31, 2014

Of Conferences and Books

A few days ago, I posted information about the upcoming National Patient Conference by the Sjogren's Syndrome Foundation. It prompted a comment from a reader who wondered if the cost of the conference -- $170 -- was worth the expense.

I have only been able to attend one of these conferences, but I have to say it was worth every penny, at least for me. At the time, I only had my diagnosis for about a year or so, and I was in the state that most of us experience early on: I was angry, feeling isolated, tired, and wanting to know a great deal more about this disease. I didn't know anyone with Sjogren's syndrome, and it seemed that my family practice doctor wasn't all that familiar with it either.

The conference proved to be very helpful. I learned a great deal, the topics were very relevant, the speakers very knowledgeable and experienced in caring for Sjogren's patients, but I have to say that the feeling of community that I found there was the best thing of all. It was absolutely wonderful to look out at the sea of attendees and know that all of us had so much in common. And the fact that the conference lasted two days and included time for socialization gave us all ample opportunities to get to know each other.

This year's conference promises once again to provide excellent information and meet and greet opportunities. In addition, fellow Sjogren's syndrome blogger Christine Molloy will be attending AND will be signing copies of her recently published book "Tales From The Dry Side". Her latest blog post lists several sources for buyers of the  book.

Here's what Steven Taylor, CEO, Sjögren’s Syndrome Foundation has to say about Christine's book:
"Books like this are a wonderful opportunity to have the Sjögren’s story come to life. Each patient’s journey is unique, yet still has similar plot lines that include a long diagnosis time, a huge learning cure, introductions to numerous new healthcare specialists and the myriad of confused looks from family and friends when they tell them that they were diagnosed with Sjögren’s.
I am humbled by those patients that are willing to tell their story. Women and men who are willing to stand up, share their struggles and their triumphs as they manage this common, yet unknown and confusing disease.”
Having just finished reading my copy of the book, I would agree with Mr. Taylor. The book presents several candid life stories shared by Sjogren's patients with the intent to increase awareness and educate patients and families about this disease. Check it out.

You can read more from Ms. Molloy on her blog, Thoughts and Ramblings on Life, Love, and Health. Christine is also featured in the January 2014 SSF newsletter in the "I Stood Up" section.

1 comment:

Christine said...

This was a nice surprise to wake up too. Thank you!