Updated: Mar 9
Ok, I know, I know... It isn't January.
I suspect a few of you might be rolling your eyes reading the title of this post.
Yes, it is in fact February 16, I know this.
But... if you live with Sjogren's, Lupus or any other chronic illness, then you know that your body can do rollercoasters, and oh what a ride I have been on.
Between doctor appointments, ER visits and a family member in the hospital, let's just say, I'm a wee bit behind on the blog.
But, as the saying goes, better late than never, right? ;)
Each month I like to compile a list of interesting articles, blogs, and studies to read up on.
If you have Sjogren's, Lupus, or any other rheumatic disease, it's worth skimming through this list to see if any of it may help you in your quest for remission against your illness.
New Year, New Ways to Cope (When Dealing with Chronic Illness). Check out my Near Years post. Yes, I’m a bit late to the Happy New Year Party. Sadly my body needed much more rest following the holidays before I could get back to my blog. I’d love to hear what you think of the post. What hobbies have carried you through and helped you manage on your hard pain days? I'd love to hear your answers, you can connect with me through my online support group here.
Disability is Not a Vacation. This is a blog post from before Christmas that I wrote, and I want to share it with all of you. It talks about disability, how difficult it is, and how we soldier on even in the midst of pain. I got deep into a conversation with a friend of mine, and we talked about how individuals with a disability, often have to fight against our governments and insurance companies just to prove we are in pain. Let me know what you think, I’d really like some feedback. Also, if you think the article is worth sharing with a family member for friend, please do so. I started my blog to help the chronic illness community.
News Articles on COVID-19
Sjögren’s and COVID-19 Vaccination Statement (as of January 8, 2021). Read the article here.
SjSC Statement on Sjögren’s & COVID-19 Vaccine. (as of January 6, 2021). Read the article here.
How Sjogren Syndrome Intersects With COVID-19. We need to look beyond our inconvenience of lockdowns to find keys to better treatment for our SS patients during infection or perhaps during the upcoming COVID-19 vaccinations.
If you have Lupus, Sjögren’s or any other rheumatic autoimmune disease - I highly recommend you check out this video. Dr. Thomas is the author of the book The Lupus Encyclopedia, and he is a wealth of knowledge on all rheumatic diseases.
The BSSA British Sjögren’s Syndrome Association shared this presentation which highlights different ways that you can take care of yourself and increase your self care day to day. I highly recommend you check it out. I learned quite a few things myself.
Physical inactivity triples risk for depression in patients with lupus. An interesting article which explains the risk factors for depression in SLE patients due to inactivity.
Breaking News for Lupus Patients! Lupus Foundation of America Congratulates Aurinia Pharmaceuticals on FDA Approval of Lupkynis™ (voclosporin) to Treat Lupus Nephritis.
Sjogren's wasn't on this list, but I assure you, children can have Juvenile Sjögren’s too. “I’m always amazed by how JA can affect a child’s health in totally unexpected ways. But it’s not a surprise when you consider that “juvenile arthritis” is an umbrella term used to describe certain types of inflammatory diseases that occur in childhood. A few examples include fibromyalgia, myositis, juvenile scleroderma, vasculitis, juvenile lupus, and juvenile idiopathic arthritis, the most common form of JA. And even then, there are six subtypes of juvenile idiopathic arthritis. “ Do you have a child with Juvenile Arthritis? If so, please let me know, I would like to hear your story. You can connect with me through my online support group here.
What Is Sjögren’s Syndrome? This is a great article to share it your friends and family about Sjögren’s. It has a lot of great information about our disease.
Nutrition to Improve Symptoms of Sjögren’s. This is an article put out by the Sjogren's Foundation. Green smoothies are my go to when I need to pack more veggies in. What is you go to meal/snack that has good nutrition?
Recordings from the 2020 Dysautonomia International Conference are now available for online viewing. Dr. Sarah (A Sjogren's Patient) has provided some information and the links to get access to these videos. Check it out here.
Baseline prednisone use tied to poor outcomes in tapering hydroxychloroquine for lupus. Read the article here.
Bioactive compound in ginger could be used in treatment of lupus. Read the article here.
Antimalarials Save Lupus Patients' Lives. Read the article here.
Looking to add some new channels to you podcast list? Check out this article that highlights some great podcast for the Chronic Illness Community. Check out the list here.
Rheumatoid Arthritis: What Doctors Might Not Tell You. This article highlights some of the things your doctor may not tell you when you get diagnosed with an autoimmune disease. While this article talked mainly about R. Arthritis, it’s applicable to any rheumatic disease. A good example they use is “your mind may be up for a task, but your body may not be”
Cavities and oral candida. This a good article to share with family to help them understand how Sjogren's can impact the whole body. It focuses on oral manifestations from Sjögren’s.
Research and Studies
Increased intestinal permeability in primary Sjögren’s syndrome and multiple sclerosis. Leaky gut may be due to autoimmune targeting of the intestinal wall in pSS and to disturbed intestinal innervation in MS. Read the article here.
Collaboration and Communication Improve Eye Care for Children Taking Hydroxychloroquine. This article outlines how the medical industry has developed new guidelines for children on Plaquenil. This drug is often prescribed to children with Lupus and Sjögren’s.
RSLV-132 Lowers Fatigue in Primary Sjögren’s Patients in Phase 2 Trial. A good article if you want to see research related to fatigue in Sjögren’s. Read the article here.
Resolve Therapeutics Publishes Positive Sjogren's Syndrome Clinical Trial Results. "Up to 75% of pSS patients report profound fatigue as the most debilitating aspect of pSS, so we are pleased that RSLV-132 was able to significantly improve fatigue in this study," said James Posada, Ph.D., chief executive officer of Resolve Therapeutics. Read the article here.
I hope that sharing this list you can help find information, resources and stories that help you on your journey.
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