My next guest needs no introduction though you can read her last post regarding her blog tour here: https://shesanauthor.wordpress.com/2014/04/04/guest-blog-by-joleene-naylor/. So, without further ado, here’s Joleene to tell you about a disease I personally had never heard of and to make you aware of what it is and…well, how about I just let Joleene tell you about it? Take it away, Joleene!
Hello! My name is Joleene Naylor. You might know me as the author of the Amarathine vampire series. Amy was kind enough to ask me to write a post on Sjogren’s syndrome – an autoimmune disease (meaning a person’s own immune system attacks their own body) that affects 4 million people in the US. As a Sjogren’s sufferer, it should be an easy post to write. But it isn’t.
Like many irresponsible people with medical issues, I tend to avoid detailed information on my own “syndrome” because it’s depressing – there is no cure for Sjogren’s. The best you can hope for are drugs/remedies to lesson individual symptoms. Since this is a systemic disorder – meaning that though the “hallmark” complaints are dry eyes and dry mouth, it attacks the entire body – there can be a lot of those symptoms. Anything from neurological issues to digestive problems to rheumatoid arthritis. Like any incurable syndrome or disorder, those symptoms will get worse the older I get, and since I’ve likely have this since I was twelve and I’m hoping to live to be at least one hundred and fifty, that’s going to be a long time for those symptoms to increase.
Hey, one hundred and fifty could happen.
But whenever I do delve into the information stratosphere of the internet to research things, there are always those stories that make me appreciate how good I’ve got it, because so many sufferers have it worse. Sure, I woke up one day when I was twelve feeling “ill” and just never got well (they diagnosed it as allergies at the time), but on the Sjogren’s foundation website (http://info.sjogrens.org/faces-of-sjogrens-aj/) there’s a boy who is nine who has it a heck of a lot worse than I do – and if he’s planning to live to one hundred and fifty too he’s really in for it. And sure, I have lost most of my natural teeth and have trouble swallowing thanks to a lack of saliva (because my saliva glands are being “killed” by my immune system), but a lady on a Sjogren’s forum has dry mouth so badly that her tongue cracks. And true, I have to use eye drops several times a day/night in order to see/blink comfortably (because that same immune system has it in for the tear producing glands) but another lady on the same forum talked about spending most of her day in bed with her eyes closed because even with eye drops and other remedies such as oil inserts and the ever popular punctal plugs (plugs inserted into the tear ducts to prevent tears from draining) her eyes dry out so fast that she hates to have them opened. And I may sunburn easily, but a man in the same thread mentioned that just sitting in front of a window will cause him to burn. Imagine not being able to enjoy a window?
I could go on and on. It may be depressing for me, but – wow! – after reading that it seems like I’m pretty lucky. Truth be told when my doctor first suspected I might have an autoimmune disease, I hopped on the internet and looked up autoimmune disorders. The internet returned a list of five, and after reading everything I could find on them, I prayed that if I had to have one to please let it be Sjogren’s because it was the best of the bad lot – the “least worst” of the group.
Since the early 2000s the online information on autoimmune diseases has exploded. Those five autoimmune diseases are now a list of eighty plus. With that expansion has come expanded information on Sjogren’s, but despite being one of the three most common autoimmune disorders, very little is still “known” about it, and it is still relatively unknown by people. I believe this is because it primarily affects post-menopausal women (at the time of my diagnosis, my doctor’s other four patients who also had it were all over sixty) a smaller percentage of whom are online than in younger age groups, but that’s just my opinion. There are plenty of people, both male and female, who now post blogs and run informational websites, forums, and support groups.
Maybe one day I’ll join them.
To find out more about Sjogren’s Syndrome check out the Sjogren’s Syndrome Foundation – http://www.sjogrens.org/
Thank you for being on my blog today, Joleene! Joleene is a fellow author and you can find her books and everything related to her writing at the links below:
Where to buy her books:
Amazon Kindle: http://www.amazon.com/dp/B00IZ6OX18
B&N NOOKbook: http://www.barnesandnoble.com/w/children-of-shadows-joleene-naylor/1118473860?ean=2940045616157
Her website: http://JoleeneNaylor.com
Her blog: http://joleenenaylor.wordpress.com/
Her Facebook Author Page: https://www.facebook.com/joleenenaylorbooks
Follow her on Twitter: http://twitter.com/joleene_naylor
Check her out on Goodreads: http://www.goodreads.com/author/show/3165393.Joleene_Naylor
Stop by her Facebook profile and say hi: http://facebook.com/joleene.naylor
Find her on Pintrest: http://www.pinterest.com/joleenenaylor/boards/
Joleene Naylor is the author of Amaranthine, a paranormal series where vampires live in the shadows and don’t sparkle. In her spare time she is a freelance artist, book cover designer and photographer. You can find information on all of her pursuits at her website http://JoleeneNaylor.com . She also maintains blogs full of odd ramblings and hopes to win the lottery. Until she does, she and her husband live near Bolivar Missouri with their miniature zoo and a couch coated in cat fur.