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Younger Lupus demographic can become elderly medical complications

by Isabel Fawcett, SPHR

Lupus is a devastating disease, including financially. It is no respecter of age or gender. Lupus exacts a heavy toll on family caregivers and those who are medically diagnosed with this chronic disease. There are at least a couple of chronic diseases I hate with a passion. Lupus is near the top of my list.

What is Lupus?

Lupus is an autoimmune and chronic inflammatory disease that may affect various parts of the body, including skin, heart, joints and some internal organs in the human body. When lupus is diagnosed, the individual's body is unable to differentiate foreign substances from the human body's own cells and tissues.

When the disease rages in the human host's body, the individual's immune system begins to create antibodies that work against the body's cells and tissues. Lupus symptoms may include severe joint pain, inflammation, and organ damage, courtesy of targeted cells and tissues.

According to the Lupus Foundation of America:

*There are 1.5 million Lupus sufferers, 80 percent of whom are diagnosed between the ages of 18 and 45 years old.

  • 90 percent of individuals diagnosed with Lupus are *female. (*Males also suffer Lupus.)
  • Of the estimated 70 percent of systemic Lupus cases, it is estimated that in 50 percent of systemic cases, at least one bodily organ will be affected.
  • Lupus is 2-3 times **more prevalent in Blacks, Hispanics, Asians and Native American populations. (**U.S.)
  • Some Lupus patients will die of the disease. (**Denotes U.S. demographic.)

Younger and Aging Lupus Profiles

It's been many years since Lupus claimed the life of one of my good friends. My friend died before the age of 40. I've also known 50 and 60-somethings who struggled with - and, still struggle with - the effects of lupus, including its more serious, sometimes life-threatening side-effects arising from potent prescribed medications.

I will long remember the prolonged suffering and slow-motion health decline of two elders (non-relatives) in their 70's who died from Lupus complications. For their family members and friends like me, their physical deterioration was painful to watch. Both endured chronic pain to the end of their lives.

If the effects of lupus on the human body can be as ravaging as I have witnessed in multiple younger and older individuals over the years, I shudder to think about lupus' effects on individuals who may survive well into their golden years with the disease.

Death at 38

My friend died at the young age of 38. When she died, she'd already endured more than 4 years of experimental medical treatment. Her aging and doting parents were her caregivers. For years, my friend's "Mami y Papi" expectantly drove their daughter hundreds of miles to cutting-edge medical centers at opposite ends of the state. The medical centers are widely known for their progressive and aggressive medical research, including with lupus patients.

After careful deliberation and extensive research of her own, my friend chose an experimental medical treatment offered by a teaching hospital. The experimental treatment was her last-ditch effort to buy herself more time on this side of eternity. She endured a battle royal with her insurance company when her health insurer initially, and more than once, refused to cover the cost of the experimental treatment. The experimental medical treatment did buy her a few more years of life, albeit a stressed existence due to quirky health insurance practices, many of which caregivers know all too well.

One of the side-effects of my friend's experimental treatment was excruciating jaw pain upon chewing. So horrific was her jaw pain, that there were many times she told me that eating and life-sustaining nourishment derived from food was not worth the excruciating pain. "You don't understand," my friend said calmly, when I encouraged her to "...just take a couple bites of the hospital food…You'll at least keep your strength up." She was already physically weak.

When my friend was alive, I sure didn't understand "excruciating jaw pain." I am strangely grateful that life offered me an up-close and personal glimpse of "excruciating jaw pain" in 2009. That day, I'd just sat at my dining table after serving food to our guests. My first (and self-imposed, limited subsequent bites) caused pain in my jaw socket like I've never before experienced in my life, and would never wish on anyone else. I decided to stop eating my meal. Sometimes that is what happens when an individual's pain is extreme. The patient simply stops eating. Makes perfect sense to me, albeit in hindsight.

The details, whys, and wherefores of my 2009 jaw pain are not germane to the point I am trying to make. All that mattered, and still does, is that the intensity of the pain I'd experienced with each attempted bite reminded me of my deceased friend and her unendingly painful physical symptoms. Unashamedly, I hung my head at the dining table, ignoring everything but my painful symptom.

Angels

My friend is now "with the angels," to whom she first belonged. Although we were good friends on this side of eternity, only when I attended her memorial service did I learn that my friend's middle name was "De los Angeles." [English translation: "Of, or belonging to, or with the angels."] Wow. What a perfect reminder of my friend's life on the spectrum that is eternity.

Caregivers Coping

Some chronic disease symptoms are very difficult to comprehend by those of us who are caregivers, friends and kin to our elders. When, or if, we don't understand what our elders may be feeling, seeing and/or thinking, it is important for caregivers to be as encouraging and supportive as we can by demonstrating compassion in our days of care. That's what caregivers, and friends, are for.

It wouldn't surprise me to learn one day that my fellow caregivers are also "de los angeles." Love those wings of yours, my fellow caregivers!

I dedicate this public education message about Lupus to my friend, Gloria De Los Angeles, gone but not forgotten by her family and friends. Bedside Socials and Chronic Illnesses, shares a hospital bedside moment I enjoyed with my friend and her parents and siblings. It was our last visit - before she returned to the angels.