Guest commentary: Someone you know has lupus

Marilyn Honahan
Lupus Foundation of America, Southwest Florida Support Group

Although many people have heard of lupus, most know very little about it. The odd thing is that lupus has touched many lives and nearly everyone knows of or has heard of someone with lupus.

Lupus is not a rare disease, in fact, 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 United States.  The word "Lupus" comes from the Latin word for wolf due to an often-present rash that many patients may exhibit which appears across the cheeks and bridge of the nose which resembles the bite of a wolf.

Lupus is an unpredictable and complex autoimmune disease which can cause inflammation and damage to any joint or organ in the body, sometimes with devastating or life-threatening consequences. Women make up 90 percent of the total population of those with lupus however it may strike men and children as well. 

While lupus affects people of all races and ethnicities, African Americans, Hispanics, Asians, Pacific Islanders and Native Americans are diagnosed two to three times more often than Caucasians although the reasons aren't clear. Ten to 20 percent of people diagnosed with lupus are children. For them, lupus affects more major organs and is more physically damaging than for those who develop lupus as adults.

There are many symptoms of lupus and numerous different forms of it which is why it is often difficult to diagnose. It can affect the joints, heart, lungs, blood, kidneys, skin, nervous system and various other organs. It Is often called "The Great Imitator" because its symptoms can mimic those of other diseases.

An illustration provided by the Lupus Foundation of America reviews some common signs and symptoms of Lupus.

Some symptoms of lupus include fatigue, headaches, painful or swollen joints, fever, anemia, swelling, butterfly shaped rash across cheeks, photo sensitivity, hair loss, abnormal blood clotting, mouth or nasal ulcers.  It can sometimes take as many as six years for a patient to receive a proper diagnosis after starting to experience symptoms which can range from mild to life threatening.  The American College of Rheumatology Diagnosis Criteria requires at least four of 11 criteria for diagnosis. 

These may include:

  • Photosensitivity (as many as two-thirds of lupus patients are sensitive to UV light present in both sunlight and artificial light)
  • Malar rash (rash across cheeks and bridge of nose)
  • Discoid skin lesions
  • Oral or anal ulcers
  • Pleurisy, pericarditis, peritonitis
  • Inflammatory arthritis
  • Neurologic-seizures, psychosis, neuropathy
  • Hematologic-low red cells, white cells, platelet 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 and as many as 66 percent of children with lupus may ultimately experience some form of kidney complications.
  • Immunologic-positive LE antiphospholipid antibodies, anti-DNA and false positive syphilis tests. 

The various causes of lupus may include:

  • Drug-induced lupus
  • Neonatal lupus
  • Discoid/cutaneous lupus
  • Systemic lupus erythematosos (SLE)

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

 The Lupus Foundation of America advocates for lupus patients as well as providing educational materials for those interested in understanding the disease. They hold many fundraising events annually to raise funds for lupus research and education as well as raising awareness of lupus.  There are various support groups throughout the state of Florida with one in Naples.

The group meets on the third Saturday of each month at Physicians Regional Medical Center at 8300 Collier Boulevard. Meetings are held from 10:30 a.m. until noon in the Palm Dining Room. There are two trained facilitators who help educate and assist patients, families and interested persons.

For information phone Marilyn at 239-398-4800 or Jan at 313-605-0401.

The Lupus Support Group of Southwest Florida will be sponsoring a fundraising event, "Luncheon for Lupus" from 11:30 a.m. until 2:30 p.m., March 10, at Treviso Bay Club. There will be a fashion show with fashions from OMG That's Chic of Marco Island as well as an auction of goods and services. 

Tickets are $50 each and are tax deductible. Although the event has been sold out, you may still support the fund-raising effort by sending a tax-deductible donation to the Lupus Foundation of "America in care of Jan Cirillo at 730 West Elkcam Circle Unit 310, Marco Island, 34145.