Reading List November 2020
Updated: Mar 3, 2021
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.
What would you add to the list?
For me it’s pain. With my headaches I suffer from extreme sensitivity to light and sounds. I often have to wear sunglasses and earplugs inside the house. In addition, my muscle pain is unpredictable at times, so that has held me back too.
Papilledema is a serious medical condition where the optic nerve at the back of the eye becomes swollen. Symptoms can include visual disturbances, headaches, and nausea.
Not exactly Sjogren's related, but it does impact the eyes and can be related to headaches. Dr’s have ruled this out for my headaches, but I wanted to share just incase others may be struggling with similar symptoms. (Headaches, tinnitus)
Dr. Ann Clarke from the Division of Rheumatology at the University of Calgary and Dr. Susan Elliott from the Department of Geography and Environmental Management at the University of Waterloo are conducting a research study on how individuals with Systemic Lupus Erythematosus access their SLE-related health information. Lupus Canada is assisting with the distribution of this survey.
Dr. Ann Clarke and Dr. Susan Elliott are currently seeking volunteers with SLE to complete their online survey. Participation in this study involves completing a 15-minute online survey related to how you access health-related information generally, and during the COVID-19 outbreak. This research will increase understanding of how SLE patients navigate health information, and the types and sources of information needed to better serve this community in the future. Please click this link to complete the survey
Many with Lupus at High Risk for Adverse Reactions to Pneumocystis Pneumonia Preventive Drug. Worth a read for anyone with Lupus and/or Sjögren’s (actually any mixed connective tissue disease).
‘I was so scared and thought that it was the end of me’ — a woman shares her battle with lupus. For the last decade, Kholofelo Faith Makuwa has learned to live with the debilitating auto-immune disease, lupus. She shares her day-to-day experience with Health-e News.
Research and Studies
“TULIP 2, which demonstrated superiority across multiple efficacy endpoints versus placebo with both arms receiving standard of care”
This study provides a new understanding of the pathogenesis of pSS, revealing that the lncRNA NEAT1 may be a positive regulator in pSS patients,” the researchers concluded.
“This is most probably the first ever case of primary Sjogren syndrome (pSjS) presenting as AIP, recovering completely in less than a month time”
You need to expand the article to read the whole thing.
Potential lupus treatment reduces organ damaging corticosteroid use. The treatment anifrolumab has been found to reduce lupus flares whilst allowing for patients to reduce the use of corticosteroids that can cause organ damage.
I hope that sharing this list you can help find information, resources and stories that help you on your journey.
Thank you for reading Warriors.
Wishing you Health and Happiness,
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