Friday, August 23, 2019

Help Us Solve the Cruel Mystery


“What,” you may ask, “is the cruel mystery?” The mystery is Lupus.

The word lupus is the Latin word for wolf. In the 13th Century, it was first described as Lupus due to the skin lesions, as many patients exhibit a malar rash across the bridge of the nose and the cheeks which resembled the markings of wolf bites. In the 19th Century (1872) physicians realized that the disease could also be internal. In the 20th Century (1948) LE (lupus erythematosus) cells were discovered. Seventy to eighty percent of patients with active Systemic Lupus Erythematosus (SLE) possess these cells. (Systemic: Throughout the system, Lupus: Wolf, Erythematosus: Red.)

Lupus is an unpredictable and complex disease that causes inflammation and can damage any organ in the body with life-threatening consequences. It is estimated that more than five million people throughout the world and over 1.5 million men, women and children of all ages are living with lupus in the U.S. Women make up 90% of the total population of those with lupus. While lupus affects people of all races and ethnicities, African Americans as well as Hispanics, Latinos, Asians, Pacific Islanders and Native Americans are diagnosed two to three times more than Caucasians. Ten to twenty percent of people diagnosed with lupus are children. For them, lupus affects more major organs and is more physically damaging than those who develop lupus as adults.

It is an unpredictable autoimmune disease that can affect any organ in the body. Types of lupus are:

  • Drug-Induced Lupus
  • Neonatal Lupus
  • Discoid/Cutaneous Lupus
  • Systemic Lupus Erythematosus (SLE)

Symptoms of lupus include extreme fatigue, headaches, painful or swollen joints, fever, anemia, swelling, butterfly shaped rash across cheeks, photosensitivity, hair loss, abnormal blood clotting, mouth or nose ulcers. It can range from mild to life threatening and no two people will have identical disease tracks. It can affect the joints, heart, lungs, blood, kidneys, skin, nervous system and many other organs. Lupus is sometimes called “The Great Imitator” because its symptoms can mimic those of other diseases. It can take up to six years to be diagnosed after a person starts experiencing symptoms.

The American College of Rheumatology Diagnosis Criteria requires at least four of eleven criteria for diagnosis. These may be:

  • Photosensitivity (as many as 2/3 of people with lupus are sensitive to UV light present in both sunlight and artificial light)
  • Malar Rash
  • Discoid Skin Lesions
  • Oral Ulcerations
  • Serositis-Pleurisy, pericarditis, peritonitis
  • Inflammatory Arthritis
  • Neurologic-seizures, psychosis, neuropathy
  • Hematologic-low red cells (anemia), white cell (leukopenia) platelet (thrombocytopenia) counts
  • Renal- abnormal blood test (creatinine) or urinalysis-may lead to complications of hypertension, peripheral edema, renal failure. (Inflammation of the kidneys can be one of the more serious complications of lupus. Sixty percent of adults with lupus and as many as 66% of children with lupus ultimately experience some form of kidney complications)
  • Immunologic- positive LE, antiphospholipid antibodies, anti DNA and or false positive syphilis tests.

There are many myths and misconceptions about lupus, some think it is a type of cancer, HIV/AIDS, arthritis, a virus or that it is contagious. It is none of these. Chemotherapy drugs may be used to treat people with lupus as they often suppress the immune system.

The Lupus Foundation of America advocates for lupus patients and holds many fundraising events annually to raise funds for research as well as awareness. Here in Southwest Florida, we are fortunate to have a local support group with trained facilitators who help to educate and assist patients, families and interested persons about this often debilitating disease. Their meetings are held on the third Saturday of each month at Physicians Regional Medical Center, 8300 Collier Blvd. Naples from 10:30 AM until 12 noon. For information phone Marilyn 239-398-4800 or Jan 239-389-2749.

The Lupus Support Group of Southwest Florida is going to be sponsoring a local fundraising event, Luncheon For Lupus on March 10 from 11:30 AM-2:30 PM at Treviso Bay Club. There will be a Fashion Show as well as an auction of goods and services. Tickets are $50 and are tax deductible. For information or to purchase tickets, go to marcoisland55@yahoo.com.

 

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