By Virginia Jasmin Pasalo

 

LAST year on 15 April 2023, my niece Emerald Grace Sacedor Catbagan posted a shocking revelation: “I have Lupus. On my 35th, three months after being diagnosed with Systemic Lupus Erythematosus (SLE), I finally have the courage to tell everyone.“

In that post, she mentioned that the symptoms started after her third pregnancy, when her child was delivered prematurely by emergency Caesarian Section (21 September 2022). Since then, she suffered weight and hair loss, constant aching of muscles and bones, especially during flare-ups.   She was advised to stay away from the sun and avoid stress. On the 6th of February 2025, on a bright, peaceful morning, we buried her. She left behind a husband and three children. Her youngest child, Francine Claire, was just more than two years old.

According to a study published in 2024 entitled “Outcomes of Patients Newly-diagnosed with Systemic Lupus Erythematosus Managed in a Tertiary Training and Referral Hospital in the Philippines” conducted in 2018-2019 among 44 patients by researchers Dr. Katrina Elys A. Suilan and Dr. Evelyn Osio-Salido, most of those who suffer are women between the ages of 15-45, with a mean age of 29. In conclusion, the study said:

“In our population observed over a period of one year (2018-2019), there was a very low rate of remission (1/44, 2.3%), mLLDAS in 68.2%, and organ damage in 15.9%. Most of the hospitalizations (65%) were for the diagnosis of lupus and all deaths (9.1%) occurred during this first hospital confinement. We must intensify our efforts to (1) achieve earlier diagnosis, (2) deliver optimal lupus treatment and supportive care during the first lupus hospitalization, and (3) initiate early and persistent immunosuppressive treatment for nephritis to improve outcomes for our patents with SLE.”

If the incidence of SLE is 30-50 per 100,000 people in the Philippines with an estimated population of 113-119 million, there could be 58,500 sufferers,  mostly women in their most productive and reproductive years (age range 15-45). The incidence of SLE varies by country and ethnicity. According to other studies, “SLE is more common and more severe in people of African American, Asian, Polynesian, Australian Aboriginal, and Hispanic descent.” The countries with the highest prevalence of systemic lupus erythematosus (SLE) include the United Arab Emirates, Barbados, Cuba and Brazil. Incidence is the number of new cases of that characteristic in the same time period while prevalence is the proportion of a population with a characteristic at a given time.

Those are measurable statistics. What is immeasurable is the grief that results from the loss of a loved one, often more intense than what is visible to the public. More than the tears that rolled freely is the fullness of the emptiness, discerned from the eyes of a mother witnessing the passing of her firstborn, in the father evading to see the remains, the involuntary sighs and shaking of a partner at a loss on how to begin after, and the innocent prodding of a child kissing the glass that now divides her and her mother: “Mama, wake up. It’s breakfast.”

Francine Claire did not see her mother descend to her grave, she was busy looking at something from her surroundings. Maybe she saw her mother’s spirit because she had this radiant, joyful smile. Her father Roald, elder siblings Chezca and Curt threw flowers as the coffin rolled down. I saw my cousin Edna walking away slowly, as her husband Edgardo receded among the crowd.

I bonded with cousins I have not seen in ages, and took group photos of them, some coming as far as the US and Canada. Funerals take away an important part of us, but also become occasions to renew and heal broken and lost ties.

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