Updated: Aug 4, 2021
I can't believe we are halfway through summer! Time flies when you are having fun. Our household has been enjoying the summer by getting out camping.
How have you been enjoying your summer?
Even in the midst of summer sunshine and a break from school, I still wanted to get the rheumatic reading list out to you.
As always, I hope you can find a few articles to help you on your journey. Let's get to it...
This post is an interview with Mitzi Williams. Mitzi is a young Lupus Warrior who is on a mission to share her story and empower lupus patients.
This post shares a few tips for enjoying the summer when you have a sun sensitivity. Note: I do reference my online store a few times, but due to a recent hospital stay, I haven't been able to get it up and running. Stay tuned!
Author Linda Joy Fullerton Swift's newly released "My Life with Lupus and Other Annoying Things" is a deeply personal story of struggle, triumph, and faith
A key opinion leader in rheumatology discusses the goals of therapy for SARDs and provides an overview of current approaches to treatment including the use of NSAIDs, corticosteroids, and immunosuppressive agents.
As the title states, this study proves that quality of life is diminished when patients experience organ/MSK damage due to lupus.
In Italy, new research shows that COVID-19-related quarantine did not impact people with lupus notably differently than the general population. In fact, feelings of sadness or depression during the shelter-in-place period were less common among survey respondents with lupus than those without the disease. The researchers report this difference may be due to the coping skills and emotional resilience many people with chronic diseases learn to adapt.
Diagnostic error is a major source of preventable harm, according to a recent study published in Diagnosis. According to the authors, diagnostic errors are the most frequent, catastrophic, and costly medical errors underlying closed malpractice claims.
Tools used commonly by clinicians to assess cardiovascular or heart disease risk were found to be only somewhat effective in predicting risk in people with lupus.
"My eyes are devastatingly dry and irritatingly itchy! I rub my left eye with two fingers and then my right, which is itchier and burns more for some reason."
"UPDATE: on July 13, the House Committee on Appropriations advanced the fiscal year 2022 Department of Defense spending bill and its $10 million for the Lupus Research Program. The bill is expected to be considered by the full House of Representatives later this month."
"July 23 is World Sjögren’s Syndrome Day and a chance for patients and doctors to reflect on this rare condition which mainly affects women. Dr Joan Ní Gabhann-Dromgoole and Dr Emily Greenan analyze the disease and its symptoms"
Research and Studies
After months of preparation, a global phase III clinical trial sponsored by the Research Institute of the McGill University Health Centre (RI-MUHC), in partnership with Canadian start-up Pulmonem, begins an innovative treatment to reduce and possibly prevent the development of severe pulmonary inflammation caused by the COVID-19 virus.
"Background and purpose: The phenotype of Sjögren's syndrome-associated neuropathy has been better characterized in recent years. However, Sjögren's syndrome-associated neuropathy remains an underdiagnosed entity with only few insights considering the pathomechanisms of nerve damage. Nerve ultrasound has proven to be a useful and efficient tool in detecting nerve damage of autoimmune origin. We, therefore, aimed to evaluate this method for Sjögren's syndrome-associated neuropathy."
"SS is an autoimmune disease, and regular check-ups and early diagnosis are essential for its control. Timely intervention can prevent serious long-term complications of the disease . LSGB is a commonly performed procedure in diagnosing SS with critical implications in patient management. However, LSGB requires traumatic surgery and can cause morbidity to the patient.
The current study has successfully demonstrated an SSMD-SFDI imaging system for mapping the structural and hemodynamic properties of the layered oral mucosa label-free and performing an optical biopsy of SS. The rapid, noninvasive diagnosis brings convenience and comfort to doctors and patients. "
A bit hard to read through the scientific aspect of this article, but there are some great notes if you can skim the document.
We created a free worksheet that you can use to help track your daily lupus symptoms.
You can get a copy of this worksheet by visiting our This page.
I am working on developing a similar worksheet for Sjögren's patients, so stay tuned!
As always we hope that everyone is finding time to take care of their bodies.
Warriors, we want to thank you for continuing to read our blog and to learn and grow as we continue to work hard and bring your much needed resources and support.
Wishing you Health and Happiness, 💜
If you want updates on the newsletter and children's book, be sure to subscribe to the newsletter below.