Background/Purpose: My recollection is that in I997 there about, I began to feel sick and I experienced these symptoms, night sweats, pain in my chest, breathlessness, always being tired, and I was loosing weight. This persisted over a span of five years. My doctor’s interpretation of my symptoms was unexplained fevers, pericarditis, pleurisy, fatigue, unintentional weight loss. Initially, the diagnosis was unclear, and the treatment focused on managing the symptoms. Eventually, I was diagnosed with mixed connective tissue disorder and later with lupus.

Intervention: My healthcare team headed by my exceptional rheumatologist was able to step me down from clinically critical to medically stable but lupus continued to ravage other areas of my life which kept me unwell.

To address this, I applied a patient-centered therapy approach to my non-clinical symptoms of lupus. I identified and addressed various issues that didn’t necessarily show up in my blood work but still impacted their health and well-being.

Maintenance: The first four issues I addressed were as follows:

1. Stress factors: By listing my assumed or real stresses, I was able to alleviate a significant level of stress. I made adjustments in my lifestyle and eliminated unnecessary sources of stress, considering my reduced income due to not being able to work.
2. Diet and Exercise: Educating myself about nutrition and eating habits led to changes in my diet, gradually reducing sugar, salt, and fried food. This change in diet resulted in reduced fatigue and enabled me to start exercising. Water aerobics, a low-impact exercise, became a fun activity for I began.
3. Support system: I recognized that relying solely on my family for support and care was not feasible, as my family members were also affected by lupus in a secondary sense. I intentionally built a support system that included emotional, spiritual, instrumental, informational, and appraisal support. I found a network of caring and knowledgeable individuals, including fellow patients, doctors, friends, and empaths, who provided the support I needed.
4. Hobby, Interest, or Amusement: Lupus had taken away my enjoyment in life, so I decided to explore new hobbies. I began visiting different neighboring towns and cities, engaging in sightseeing, taking pictures of historic architecture and water views, and people-watching from my car. This allowed me to find amusement and have fun without requiring extensive physical activity.

Quality of Life: Gradually over time there was a significant change in the quality of my life. I learned how to distress, I was going to the gym for the first time in my adult life, I had a new social community and I was out and about. More importantly I believe that the application of precision patient centered therapy to my non clinical lupus symptoms impacted my clinical symptoms. I had fewer flares and no more lupus related hospitalization.

The Labalaba Foundation inspired by my approach, adapted this patient centered approach in their programs for lupus patients self care management.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-centered-care-the-complete-picture/