Rheumatic Reading List June 2021
Hello Warriors!
It has been busy in our household as spring transforms into summer. Children growing out of clothes, a change to summer attire and school shut downs have consumed me the past three weeks.
I am a bit late with the reading list this month, but I say better late than never!
I hope you can find a few articles to help you on your journey. Let's get to it...
Blog Reading
Wellness Warrior: Laura Clowdus
This post is an interview with Laura Clowdus RN, BSN. Laura shares her diganosis story along with how it drove her into a new career path.
The Best Products For Headache Disorders (Migraine, Tension, NDPH)
This post shares a giant selection of products that can help individuals who deal with chronic headaches. While medications work for many, there are some individuals (like myself!) who despite trying a plethora of medications, still have daily pain. These are the non medication products I recommend.
Patient Stories
Rudy Villamar: Conquering the Storm
"It started with a strange and sudden swirl of symptoms during the summer of 2013 – a skin rash, enlarged lymph nodes on his neck and arms, and stiff knuckles and joints that would turn white in the shower. Rudy Villamar was 45 years old and suddenly felt like his body was turning on him from all sides for no apparent reason."
News Articles
Battling the Sjögren’s Blues With Creative Art Therapy
"I like to think I’m a content, grateful, positive person for the most part, but there are times I get sad or depressed, sometimes for no specific reason."
"There are various ways to battle the blues, but one of my favorites is creative art therapy."
"Patients suffering from Sjögren’s syndrome, characterized by dysfunction of the lacrimal and salivary glands, experience debilitating dry eyes and mouth, and corrective gene therapy of mutated aquaporins in mice was able to alleviate this condition."
Woman 'poisoned' by breast implants baffled doctors with odd symptoms
"Doctors were equally baffled by her symptoms and over the years, they diagnosed Stephanie with anxiety and multiple sclerosis."
"In 2020, Stephanie was diagnosed with Sjögren's syndrome in 2020 – an autoimmune disorder that causes the immune system to mistakenly attack the body."
Managing Your Lupus by Emily Littlejohn
A short video on managing your Lupus
Improving the Accuracy and Usefulness of the Current Lupus Organ Damage Score Index
"Assessing chronic organ damage in people with lupus is one of the key ways both clinicians and researchers evaluate individuals’ health and the severity of the disease. While the current tool used to measure chronic damage, known as the SLICC-ACR Damage Index (SDI), has been widely validated and commonly used for the past 25 years, lupus science and medicine has rapidly evolved in that time. And, with widespread use, some of the tool’s limitations have become apparent."
"People with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE) demonstrated a relatively high resilience to hydroxychloroquine toxicity, according to research presented at the Association for Research in Vision and Ophthalmology (ARVO) 2021 Annual Meeting, held virtually May 1 to 7, 2021."
Promise for belimumab (Benlysta), rituximab combination in patients with primary Sjögren's syndrome
Benlysta is in the study phase to be used for Sjögren’s patients. Currently Benlysta is only available for Lupus patients.
I have Lupus and Sjögren’s. I suffered two years with great disability and Benlysta is the medication that turned my world around to a place where I can enjoy life and live a little bit again. I love this medication and I am excited it is being studied as an option for fellow Sjögren’s patients.
Research and Studies
Anifrolumab Improves Skin and Joint Disease in People with Lupus
New data analysis revealed at this year’s European Congress of Rheumatology (EULAR 2021) shows trial drug anifrolumab consistently improves both skin rash and arthritis in people with lupus compared to placebo (a harmless pill used in clinical trials for a comparison).
Free Resources
Free Worksheet - Preparing for your Rheumatologist Appointment
We created a free worksheet that you can use to help get prepared and organized before your next appointment.
Anyone can use this worksheet whether it is your first appointment, or have been a patient for many years. This free worksheet can help you!
You can get a copy of this worksheet by visiting our Free Resources Page.
As always we hope that everyone is finding time to take care of their bodies.
Warriors, we want to thank you for sticking with us and continuing to learn, grow and be inspired to live your best life with a chronic illness.
Wishing you Health and Happiness, 💜
Heather
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