Lupus Awareness Month
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.
Per the Lupus Foundation of America website:
We can make lupus visible during Lupus Awareness Month by educating friends, family and others about lupus and it's affects.
Lupus Awareness Month is a name to be taken literally: it's the month of May where we all put in extra effort into letting the world know about lupus. We educate our communities and take to social media and let people know what lupus is, how it affects us and what we all can do about it.
World Lupus Day Is May 10, 2021
In addition, the World Lupus Federation declares May 10, 2021, to be "World Lupus Day".
Per the World Lupus Federation website:
World Lupus Day is sponsored by the World Lupus Federation, a coalition of lupus patient organizations from around the world, united to improve the quality of life for people affected by lupus. Through coordinated efforts of its global affiliates, the World Lupus Federation works to create greater awareness and understanding of lupus, provide education and services to people living with the disease, and advocate on their behalf.
World Lupus Day serves to call attention to the impact that lupus has on people around the world. The annual observance focuses on the need for improved patient healthcare services, increased research into the causes of and cure for lupus, earlier diagnosis and treatment of lupus, and better epidemiological data on lupus globally. World Lupus Day serves to rally lupus organizations and people affected by the disease around the world for a common purpose of bringing greater attention and resources to efforts to end the suffering caused by this disabling and potentially fatal autoimmune disease.
How Can You Get Involved?
The Lupus Foundation of America suggests the following on their Lupus Awareness Month web page:
There are many ways you can help Make Lupus Visible in May - from sharing your story on social media to starting a fundraiser or making a donation.
Of course share your own story at your personal discretion.
Although powerful to tell your own story, I sometimes fear it can adversely impact your career or chances with potential future employers.
Shareables
I find their "toolkit page" extremely helpful with education shareables designed for social media posts. The shareables are easy to post as links or images. As you can see this article contains many of the shareables I believe convey powerful information and statistics related to the impact and severity of Lupus.
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.
More "Life With Lupus" articles by this author...
- The Wolf Within Me
- When The Wolf Escapes
- Medications
- Mortality
- Perhaps I'm A Better Man...Make That Wolfman?
- The Life I Lost
- Everything Hurts
- Coping At Work
- Dealing With Doctors
- Flare
- Home Remedies
- Relating To Others
- Fear
- Online Community Review - BetterDays
- Vaccination Shot #1
And related articles by this author...
- Working With Serious Or Deadly Illness?
- Biggest Surprise Working With Serious Illness
- Lupus And Raynaud's Disease
- No One Gives A Fork How Many Spoons I Have
So What Exactly Is Lupus?
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 inflammation and its other biochemical weapons and agents to kill cells and shutdown 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 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.
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