Friday, November 15, 2013

Be Informed. Be an Advocate

I recommend this one, for starters. Image found on Amazon

I received this amazing email from my nurse friend Kathleen yesterday:

This week we had a patient for knee replacement, who had Sjogren's.  I have learned so much from your Blog, I was able to share with nursing/PT staff to give them insight into some of her needs.  She was so appreciative to have someone who had not only heard of the disease, but understood some of the symptoms she has. 

Woo hoo! THIS is why I blog.

Guys. Awareness of this disease is vitally important. Not everyone's strength lies in blogging, but you can use YOUR strengths in other areas to promote awareness of and education about Sjogren's Syndrome and other autoimmune diseases. There is an estimated four million people out there with Sjogren's syndrome. If each of us educated even one person about it..... my goodness. What a difference that would make.

It is hard to explain Sogren's, I get that. Sometimes my brain fog makes finding those important words difficult. And in certain situations it's just not an appropriate subject for discussion. But whenever the opportunity presents itself, be prepared. Take time to educate yourself about your disease, then take the time to educate others when you can and when it's appropriate.

Check my sidebar on the web version of Reasonably Well and  follow the numerous links to excellent patient education materials from the Sjogren's Syndrome Foundation that put some of the very complex concepts of our illness in a relatively simple format. I have also included links to other reputable sources of information, and other Sjogren's blogs as well. Print out a copy of the excellent article written by sjoggie Sarah Schafer, MD published in The Rheumatologist. Read books about autoimmune disease and Sjogren's syndrome.

Go get 'em sjoggies.

1 comment:

Anonymous said...

You forgot part of my AWESOME YOU ARE!