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TJ Wolf
Life With Lupus: Awareness Month - Did You Know?
2021-10-16
Life With Lupus: Awareness Month - Did You Know?
May 1st begins Lupus awareness month.
A month dedicated to informing and educating the world about a hidden and hard to diagnose disease that impacts so many of us.
Today's article is dedicated to education about Lupus for Awareness Month.
So in honor of May 10th being World Lupus Day, here are ten Did you know? points to learn more about Lupus...
1 - About Lupus
Did you know Lupus is a chronic, autoimmune disease that causes inflammation anywhere in your body and can affect any of your organs, the skin, and joints?
Melanie Wasser/Unsplash
Systemic Lupus Erythematosus is a chronic inflammatory condition that affects connective tissues such as cartilage and the lining of blood vessels, which provide strength and flexibility to body structures. SLE affects multiple organs and structures, including the skin, joints, kidneys, lungs, central nervous system, and blood-forming (hematopoietic) system, and the signs and symptoms differ from person to person. SLE is one of a wide number of autoimmune disorders, which occur when the body's immune system attacks its own tissues and organs.**
Lupus flares range in severity from moderate to severe. SLE is most prevalent in women of reproductive age (often beginning at childbearing age), though lupus is becoming more widely recognized after the age of 40, particularly among Europeans.**
2 - Numbers
Did you know there are an estimated 1.5 million Americans living with this cruel disease?*
La Victorie/Unsplash
Did you know there are an estimated 5 million people living with Lupus worldwide?*
It occurs in people of all ages, races, ethnicities, and genders.
3 - Appearance
Did you know Lupus is known as an invisible illness because someone with lupus can appear perfectly healthy despite battling many internal issues, such as debilitating pain, extreme fatigue, blood disorders, and more?
Sam Burris/Unsplash
4 - Symptoms
Did you know people with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives?
Educational Shareables/Lupus Foundation Of America
5 - Diagnosis
Did you know it can takes 6 years (on average) to receive an accurate Lupus diagnosis?*
Bill Oxford/Unsplash
6 - Impact
Did you know Lupus can affect your skin, joints & organs?
Claudia Wolff/Unsplash
Lupus can affect any organ in the body including the heart, kidneys, lungs, and more.
Though these symptoms cause debilitating pain & can even be life-threatening, they’re not often visible from the outside, causing others to not understand.
7 - SLE
Did you know Systemic Lupus Erythematosus (SLE) accounts for approximately 70% of all cases of lupus?*
In approximately half of these cases, a major organ or tissue in the body, such as the heart, lungs, kidneys, or brain will be affected.
8 - Treatment
Did you know the current treatments for SLE are Corticosteroids, Immunosuppressant, Antimalarials (Plaquenil), Biologics (Rituximab, Belimumab), and Nonsteroidal anti-inflammatory drugs (NSAIDs)?**
Marcelo Leal/Unsplash
9 - Effectiveness
Did you know Hydroxychloroquine (Plaquenil) and Belimumab (Benlysta) are approved therapies for the treatment of SLE?
With the approval of these therapies, the outlook for patients SLE improved from a 4-year survival rate of ~50% in 1950 to a 15-year survival rate of ~85% by 2013.**
10 - Future
Louis Reed/Unsplash
Did you know that new biologics targeting B cells, T cells, or cytokines (especially interferon) are still going through trials?
These raise the hope that novel therapies for patients with refractory SLE may be available soon.**
**AtlantaNews.Net Article: Rich Insights into the Systemic Lupus Erythematosus Market, Epidemiology Segmentation, Pipeline therapies and Major Players in the Industry published Monday, May 3, 2021
About The Author
I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.
In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with the inflammation and its other biochemical weapons and agents to kill cells and shut down organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.
The Wolf Within Me
Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of a cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.
I hope all is well as it can be with you TJ! I've been somewhat good lately. Did great after shoulder replacement surgery. Better than I thought I would. I was just wondering if you ever get a brain fog? I feel like I can't concentrate and just stare into the light and more confused when I try to do something. I start my Bynlista infusions next month so hopefully that will help! Stay safe and strong and blessed! 🙏💓🤗💕
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