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Saturday, July 03, 2010 was a special day for patients with lupus nephritis. Prof. Sandra Navarra opened the session by informing the audience that third year medical students have been invited to learn from the lupus patients. Lupus patients were invited to participate in becoming “lupus patient partners” to help teach medical students about lupus. Prof. Navarra shared some real-life experiences of lupus patients and their caregivers, using these examples to inspire and encourage the patients. Likewise, Prof. Navarra shared the insights of the third year students who participated in previous meetings with lupus patients. She expounded on how love can overcome anything, on how important family support is and how grateful we should be despite the challenges. The third year medical students were reminded that doctors should remain humble as medical science does not have all the answers. She challenged them further to do their best to learn on their own as they will be the future doctors of the lupus patients. Mrs. Sylvia Reyes, one of the lupus patient partners, spoke on behalf of the patients, to thank Prof. Navarra for organizing the session.
Prof. Navarra presented the lupus statistics and mission, vision and the programme of the Lupus Inspired Advocacy (LUISA) Project. She then presented facts on caring for lupus nephritis, including the specific instructions on proper collection of urine samples. She exhorted he patients to be vigilant about lupus nephritis even when they do not feel anything. She explained the lack of robust Filipino data in lupus nephritis, hence the need for a Filipino lupus nephritis database. She emphasized the lupus presents in different ways – no 2 patients withl upus are ever the same - therefore treatment for each patient is individualized. She mentioned that the number one cause of treatment failure is the non-compliance to medications of patients. Based on the 2009 Census of the USTH Section of Rheumatology, Clinical Immunology and Osteoporosis, of the 471 Lupus patients seen, 143 had lupus nephritis. Of these eight are awaiting renal transplantation.
A piece of good news: The LUISA Project announced the establishment of the Lupus Care for Kidneys (LuCKy) program in coordination with the Philippine Charity Sweepstakes Office, which will give financial assistance to qualified lupus patients who fulfill all the requirements. Patients were encouraged to start preparing for the requirements by organizing all case summaries, laboratory and ancillary test results, medications, prescriptions into a “clear book” or personal folder. This will also empower patients to play a major role in the management of their chronic illness.
“Together, we will make this world a better place to live for persons with lupus.”
Some personal insights:
As I watched the presentations and the interactions of the participants, I sat in awe of Prof. Sandra Navarra, how she, as usual, maximizes the use of time by creating a special session that enables patients and caregivers to learn about caring for lupus and while at the same time, helping our third year medical students learn from the real life experiences of lupus patients. I am also in awe with her great appeal with the audience. As a third year medical student I was inspired to take up Rheumatology because of Prof. Navarra. Today, I continually get inspired while working with and learning from her. I am grateful for the privilege of being her student. As a medical clerk, my first patient was a lupus patient from whom I learned a lot. That affirmed my vocation as a rheumatologist. I am grateful to God for this and many more.
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