Luck Fupus

A lupus blog…

It’s Never Lupus

Before my diagnosis, I didn’t know too much about lupus. In nursing school, I think lupus was mentioned once during a medical-surgical lesson, and the only thing that was drilled into our brains was that majority of patients present with the malar rash.

Note- When I sat for my nursing boards, there was a question on lupus. But as I was playing Mystery Diagnosis a few years later, lupus did not cross my mind.

When I mention to someone that I am living with lupus, I get one of two responses. “Ohhhh, my mom’s friend’s sister’s daughter has lupus… but she’s perfectly fine,” or “Did you see that Seinfeld episode?!?!?!”

Note- I *hate* Seinfeld.

Or… wait for it….

Note- Listen to the dramatic music playing at the 20 second mark when Cameron tells a boy’s father he may have lupus; I assure you this was not the case when I received my diagnosis.

Systemic Lupus Erythematosus (SLE), is an autoimmune disease that ravages different parts of the body. Virtually any organ system can be affected by lupus, is more pervasive and more severe than people think, and has an impact that the public doesn’t realize. Though the disease can be life-threatening, lupus is considered an invisible illness; most people with lupus don’t look sick.

There are different types of the disease, but it’s understood ‘lupus’ refers to the systemic form.

Lupus is a chronic autoimmune disease in which something goes wrong with the immune system. The immune system creates antibodies designed to fight off infection, but those with the disease cannot tell the difference between foreign invaders and the body’s healthy tissues. Instead, the immune system creates autoantibodies which attack healthy tissue and organs and destroy them. Subsequently, the autoantibodies lead to inflammation, pain and damage to the body.

Research suggests an estimated 1.5 million Americans live with lupus, making it more prevalent than multiple sclerosis, cystic fibrosis, cerebral palsy and sickle cell disease COMBINED. Despite this, lupus continues to be underfunded for research and development for more effective treatment. The only medication specifically used for the treatment of lupus was not FDA approved until 2011.

Research suggests an estimated 1.5 million Americans live with #lupus, making it more prevalent than multiple sclerosis, cystic fibrosis, cerebral palsy and sickle cell disease COMBINED Click To Tweet

Of the 1.5 millions Americans living with lupus, 90% of them are women, and though all races are affected, the disease more frequently strikes African Americans, Asians, Hispanics/Latinos, Pacific Islanders, and Native Americans two to three more times than Caucasians.

So how a caucasian, eastern european Jew like myself was lucky enough to develop it is beyond me.

Lupus is not contagious, and it’s unknown what specifically causes the disease; research suggests genetics, environmental factors, and hormones have a hand in triggering the disease.

There is no cure.

Throughout the month, I’ll be continuing to write posts, including my own diagnosis nightmare story, and information on signs/symptoms, complications and treatment options.

The more you know.

For more (reputable) information, please visit Lupus Foundation of America or the Alliance for Lupus Research.

 

The more you know...

The more you know…

Comments

  1. Holli says:

    I’m a bad daughter! I totally forgot to wear purple today for my mom and for you. Love you !!

  2. Whitney says:

    I loved House…but it drove me nuts how Lupus was a ‘joke’ diagnosis all the time.

    My doctor is always wanting to test me for Lupus because mom has it, and I keep reminding him I’m adopted. Poor guy is on the opposite side from most doctors. Because of Mom he sees Lupus everywhere.

  3. Teri says:

    I was not aware you had Lupus until recently and you right there was no signs to say anything more than you are a beautiful young college student! I’ll wear my purple and spread the word about awareness.

  4. Richard says:

    Hello, this is Richard, a representative of Reboundwear.
    We are an adaptive wear company whose aim is to help those dealing with disabilities, post-surgical lifestyles and other cancer related ailments.
    I know it may seem a bit unorthodox, but I am reaching out to you to see if we could possibly share a portion of your story in our blog. We understand that everyone has different obstacles that they must face in their journey. Our goal is to try and share these stories to motivate each other into pushing forward and onward.
    Please let me know if you would not mind being a voice on our page.
    Thank you
    Reboundwear.com

  5. Daniel S Lennox says:

    I don’t know if this is the right section to ask this but I’ll take my chances anyway.
    Hi Marlajan, I just want to ask if you ever tried using cannabis for pain management? I am 35 years old and been battling lupus for almost half of my life now. I have read many articles suggesting highly concentrated cannabis oil can be effective and alternative meds for people suffering lupus. Pain and inflammation are two commonly recognized therapeutic properties of cannabis, so its ability to treat lupus effectively is not surprising. Like this review on a Northern Lights strain from http://www.ilovegrowingmarijuana.com/northern-lights/. This plant has very high CBD and pain suppresing effect. I am very familiar with the high and physical effects of cannabis but I cant find any solid evidence that it will work. Let me also hear your thoughts or personal experience when it come with medical marijuana. Thanks Daniel

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