I have been thinking a lot about whether to write about Sjogren’s this month, wondering if perhaps the people who know me already knew enough about Sjogren’s. If people were wanting to know more they could just Google and get plenty of information that way, especially if searching for the Sjogren’s Syndrome Foundation or Sjogren’s Canada. Another reason for my uncertainty was because I didn’t want my blog to become focused solely on Sjogren’s.
I suspect some readers may be thinking I write about my own experiences with illness to garner attention or sympathy. Many people, including some health professionals, believe Sjogren’s is just “not that big of a deal”. Often people tell me I could have a disease much worse than Sjogren’s. That is true. Are there worse diseases to have? Of course; ALS comes to mind first off, but there are many others. I currently have people I love being treated for metastasized cancer; others hospitalized with other autoimmune illnesses fighting courageous battles to regain some semblance of health. I understand the reality of more severe illness, but I also want people to be aware that Sjogren’s is not a simple, relatively benign disease, just a nuisance.
Several years ago a study was done comparing quality of life for patients of various chronic and / or progressive diseases – Sjogren’s was on par with Multiple Sclerosis for impact on day to day life. Using eye drops is a mere inconvenience compared to many other aspects of the disease. Sjogren’s can progress to affect organs such as the liver and the lungs. Many of the treatments for Sjogren’s and related complications are chemotherapy and biologic drugs, “heavy hitters”, also used for cancer treatment or to prevent rejection after organ transplants. (It should be noted that there currently exists no specific treatment protocol for Sjogren’s as there is for MS or RA.)
Yesterday after blogging about one specific and minute part of my Sjogren’s journey, my eye care ritual, I realize I do need to continue to write about Sjogren’s. Not just the facts and “bones” of what it is as can be found on many medical websites, but the human experience of my journey. I can tell you from my brief time in a Sjogren’s on-line support group, though sharing the same disease and many of the same symptoms, every patient has a unique combination of symptoms and treatment.
Thank you to those who read yesterday’s blog post and made comments, or asked questions on my Facebook page, you have shown me there is still more for me to tell about Sjogren’s. If you look in one of a very few books about Sjogren’s, or on-line, you can quickly discover what tests they can do when looking at your eyes, and some possible treatments. From the responses I received yesterday, I realized yes, a book can tell you Sjogren’s patients use eye-drops daily, but that doesn’t really tell you what that actually means day-to-day. Over the next month I hope to help you understand what it is like for me to live with this chronic, incurable, progressive disease.
Click on text below to view brief video:
Excellent 3 minute TV News Interview with a Patient + Dr.