Lupus Patient Voices Concerns to Health Professionals

Columbia, SC:  From April 15 – 17, 2016, the Palmetto Medical, Dental and Pharmaceutical Association (PMDPA) and the National Medical Association (NMA) join in a combined effort to hold a patient-centered healthcare conference at the Marriott Hotel.

Lupus patient and advocate, Hetlena Johnson, will have the opportunity to speak to those attending the PMDPA meeting. As the Chief Volunteer Officer of Lupus Foundation of America, South Carolina Community Partner (LFA SC CP), she has daily insight into how Lupus dominates the lives of those diagnosed and their loved ones. Johnson hopes that by explaining the frustration and confusion that Lupus patients experience on the road to being diagnosed, medical professionals will be more attentive to the signs and symptoms that may warrant being tested for Lupus.

The PMDPA has been established since 1896. Because many sick and afflicted are in desperate need of expert professional care, PMDPA draws upon physicians and other medical professionals to broaden its perspectives and keep abreast of the advances made in medicine.  PMDPA has marked steady growth in its membership and this event will mark its 120th annual meeting.

The NMA, established in 1895, is the nation’s oldest and largest organization representing African American physicians and health professionals in the United States. Once upon a time, membership to professional medical associations excluded black medical professionals. The NMA was created by a group of black doctors and health professionals who found it necessary to establish their own medical entities and care facilities.

During the conference, health professionals in the field of medicine, dentistry, pharmacy, and nursing will come together to gain insight on various health topics affecting our communities today. One of those topics includes learning more about the Lupus pandemic. Lupus is a disease in which the body’s immune system is overactive and does not function as it should. The immune system attacks the body. From this attack, those afflicted can experience long periods of inflammation of the joints, kidneys, lungs, skin, and nervous system. Various other organs of the body can become distressed also. The specific cause of Lupus has yet to be discovered, so there is no cure. The National Lupus Foundation of America, Inc. reports that 1.5 to 2 million Americans have been diagnosed with Lupus. More than 5 million people worldwide are suffering with this auto-immune disease.

Healthcare professionals may struggle to understand and diagnosis Lupus early on. Because of this, many of those stricken by Lupus-related symptoms may take three to four years to be diagnosed. No two Lupus patients’ symptoms are alike. Ninety percent of those diagnosed are women, and three out of four Lupus patients are of African American, Hispanic, South and Southeast Asian, and North American First Nations decent. According to a study by the National Lupus Foundation of American, more than 55% of those diagnosed with Lupus have seen four or more healthcare providers before being diagnosed correctly.

After seeing doctor after doctor, Johnson was finally diagnosed with Lupus during her senior year in high school. She uses her 23 years of personal experience with the disease to encourage others to find joy in the change and resulting calmness that occurs when you’re working with a health professional to find that right treatment path. She uses inspiration from a doctor telling her to write down how she was feeling to track and monitor her disease. Johnson noted, “At first, I was devastated when my doctor told me to write down what’s wrong with me, and then we’ll see you during your next appointment,” Johnson explained. “I thought I was there to be seen and be told what was wrong with me.” She continues: “I was mad. I was so mad that I went into a depression from the pain and confusion. This caused me to not want to go see any doctors at all.” Soon Johnson got back on track and now shares her experiences with others by allowing them to take a look into the life of a newly diagnosed Lupus patient in her book, ‘Diary of a MAD Lupus Patient.’  “I hope to be able to express to the healthcare professionals attending the meeting that it takes a different perspective of care when it comes to treating and diagnosing Lupus,” concluded Johnson.

About Lupus:  To learn more about Lupus, go to www.lupus.org. To find out about support groups in your area, visitwww.lupus.org/southcarolina or call Lupus Foundation of America, Inc. South Carolina Community Partner at 803.563.8117.

*Source: as printed in The Minority Eye; http://theminorityeye.com/lupus-patient-voices-concerns-health-professionals/

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