Trisha Duncan knew what she wanted in life. So much so that while in the middle of all the chase and pursuit, no one saw the beginnings of something sinister lurking inside her body. They hardly realized it at first, what with her youthful glow and energy.
Up until the morning of the first week of Feb. 2015. Trisha fell unconscious, all so suddenly, on a flight of stairs, while on her way to school.
Her ordeal began in 2013. Trisha took to liking a reality show—I Am Meg—well enough to join it. The show was, as advertised, “a top-rating, social media trending reality TV show for the bold, young women of today.”
She was 18 and in the pink of health. While she didn’t end up as the favored MEG Ambassador, it didn’t stop Trisha from pursuing other plans. It was to her advantage that she was a young woman with big dreams and energy to boot. Her participation in the show led to one open door after the next.
A modelling career had begun to take shape shortly after. For Trisha, it was a dream of a lifetime. She had the looks and the youthful radiance to go with her persistence. The years 2013 and 2014 were anything but glum for models and product endorsers. The product launchings at online shops had reached fever pitch by then, thanks to social media and its power to spread the word.
The companies needed a beautiful face to go with their products and services, and Trisha was more than willing to provide the glitter and the glamor.
In time, Trisha proved herself to be a hard-at-work model. At first, she straddled school and the several odd hours during photoshoots with relative ease. She’d had lots of practice. As a child growing up with an athlete for a father, she knew that she was up to the job both physically and mentally.
Even then, Trisha was into swimming, badminton, gymnastics, ice skating, ballet, even piano lessons. Her father, a former basketball team captain, did much to influence her love for sports and competition.
Never the idle mind, Trisha kept to her schooling regardless of the extracurricular activities. She was a busy body, she said, always in a hurry to attend to academic requirements, photoshoot deadlines and sports activities.
Her endurance and passion were at their peak. She took everything in good stride, eating healthy while in the middle of it all. If anything was certain at that point, she knew it was her time to shine.
Fatigue caught up with her soon enough. The five- to eight-hour photoshoots and other extracurriculars, to say little of the demands of school work, had begun to take their toll.
Trisha began noticing a significant drop in her overall strength. On several occasions, she could neither stand nor simply sit up. It was as if she had breached her limits. Her body was crying out for rest.
All the first signs were there: swelling of the feet, recurring fever of unimaginable frequency, and an overall feeling of exhaustion which, by all standards, hardly figured as commonplace. She was being sapped of her strength and no one knew why. At one point, she was forced to cancel many of her previously scheduled engagements. School, too, became to much of a burden.
Still, it hardly crossed Trisha’s mind that something was already seriously wrong. She continued to push, and push, to do what she loved doing. Until one morning in February 2015 arrived, the day she found out she had to go to school for an exam.
For all the endurance she had shown in the previous years, Trisha didn’t make it to campus. At the waiting area leading to the Doroteo Jose station of the Light Rail Transit, the young model collapsed and fell down the flight of stairs. She had already lost consciousness prior to hitting her head on the pavement below.
At the foot of the stairs, a young woman, who was a registered nurse, and a security guard immediately came to her rescue. Trisha, as was later described by the nurse had suffered convulsions. They decided to bring her to the Manila Doctors Hospital immediately as the ambulance arrived.
All this time Trisha’s mother, Emma, was in the throes of panic. She couldn’t place it accurately, but she knew something was terribly amiss with her daughter. A mother’s instinct, Trisha told the Philippines Graphic. The phone calls kept on coming, to the extent that the good Samaritan had the good sense to answer it, finally, and relay to Trisha’s mother that her daughter was now at the emergency room of the Manila Doctors Hospital.
At the ER, everyone was in a frenzy to get to the bottom of what had happened. Trisha’s mother, who was supposed to go to work, arrived moments later to check on the condition of her daughter.
The CT scan showed no serious injuries to the head. The first diagnosis was a severe form of pneumonia due to the convulsions. She was confined for treatment lasting a week.
After having breathed a sigh of relief a week after, Trisha made a request: She wanted to pass by the hospital’s chapel for a quick prayer. On their way to the second floor via the stairs, straight away, Trisha couldn’t lift her leg. To make matters worse, her strength had begun to wane drastically, forcing both mother and daughter to pause.
As luck would have it, the nursing interns and doctors-in-training saw them and offered their assistance. Without realizing it, a rash had already appeared on her face. Having mistaken it for sunspots earlier, both mother and daughter didn’t give it much thought until one of the interns suggested she might be suffering from lupus.
Trisha underwent a battery of tests. The nephrologist, upon seeing Trisha’s face, swollen red with the “butterfly” rash, immediately concluded it was lupus.
The nephrologist was right. At the Manila Doctors Hospital and St. Luke’s Hospital, where they got a second opinion, Trisha tested positive for the disease.
The Lupus Foundation of America describes lupus as “a chronic autoimmune disease that can damage any part of the body (skin, joints, and/or organs). ‘Chronic’ means that the signs and symptoms tend to last longer than six weeks and, often, for many years.
“In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune systems produce proteins called ‘antibodies’ which protect the body from these invaders.
“‘Autoimmunity” means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”). As a result, it creates autoantibodies that attack and destroy healthy tissue.
“These autoantibodies cause inflammation, pain, and damage in various parts of the body.”
To add: “(1) Lupus is not contagious, not even through sexual contact. You cannot ‘catch’ lupus from someone or ‘give’ lupus to someone; (2) lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy; (3) Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive; and (4) lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.”
“That night, I wept,” Trisha said. “I didn’t know what lupus was. I knew my family has a history of hypertension and arthritis (pain in the bones and joints), but not something as serious as lupus. My Mom found out later that one of her cousins had been hiding the disease from everyone. So, it’s in our family.”
The next day, the day after Trisha and her mother received the second opinion, things went from bad to worse. Massive doses of steroids—methylprednisolone—caused disorientation. She could barely remember where she was, who her parents were, let alone what was happening around her.
Trisha’s body also began to bloat, leaving her in a far worse condition and appearance than when she first arrived. It was a result of her kidneys and liver and other internal organs failing to function properly.
The doctors rushed to treat each one to keep her alive. They closely monitored other complications that were taking place simultaneously, like fever temperatures reaching 40 and above, a urinary tract infection, and a significant drop in blood platelets, among other things.
Her white blood cell count, which normally should be around 150 RBC, had dropped to five.
From February to March 2015, the doctors summoned all their expertise to keep Trisha alive. For a little over 30 days, all of the 11 or 12 doctors, sourced from the Philippine General Hospital, faced problem after problem: possible pediatric infectious diseases and blood in her feces. They actually feared the worst: Trisha bleeding out of her eyes, nose, mouth.
The young woman’s weight dropped to 88 lbs. from the 110 lbs. she weighed when she arrived in the hospital for treatment. The rashes on her face had also swelled to a full “butterfly,” scarring her face, coupled with a thinning clutch of hair. The hospital staff decided to stop Trisha from looking in the mirror.
The hospital called the services of a hematologist—a rather rare and expensive branch of medicine in the country—to treat her condition. The doctor immediately performed a “bone marrow aspiration,” which ruled out any need for a bone marrow transplant. However, Trisha needed to go through 10 blood transfusions in the course of the first treatment.
Thanks to a certain Bryan, a classmate in her Literature Class, and hundreds of others who went out of their way to help, even donate Type O blood and some cash.
Little did Trisha know that her Mom used her Facebook account to seek the help of people online. It was Bryan who, later in the day, took it upon himself to create a new Facebook page so they could pull the needed resources for treatment.
“We could not have made it without the help of these people,” Trisha said. “As for the whole treatment, each day must’ve cost around P30,000. I had blood tests and transfusions every single day. The bloating left me with huge scratch marks because my weight thereafter dropped. The needles had left scars which I still bear on my body today. It was good that, in time, they all healed.”
Scarred but unshaken, Trisha managed to “heal” after more than 30 days of continued treatment. The blood transfusions helped immensely. While the physical pain remained, it was rather easy to manage, said the young model. It was the other restrictions that left her “quarantined” inside her home: for one, she cannot stay under the sun for too long.
“I’m a swimmer, and so naturally I love the beach,” Trisha said with a hint of sadness. “Suddenly I realized I’m not normal. Now I can’t even enjoy a few minutes under the sun. I cannot even brush my hair as it would cause me pain. We had to buy a whole bottle of oil so we could comb it.”
The next six months saw Trisha going through another set of treatments, this time resembling chemotherapy. This caused her to lose much of her hair. But that was nothing compared to seeing, quite accidentally in her mother’s camera phone, what had happened to her face.
The “butterfly” rash had spread and swelled to such proportions that it prompted Trisha to ring for the nurse and doctors. “Will this ever disappear?” she asked, in a panic. True enough, as the doctors had averred, the rash disappeared in time. For someone whose job was to be in front of the camera, it gave Trisha quite a scare.
Since then, life for the whole family did not return to “normal”. Everything was to be examined and measured—food, accumulation of everyday dust, sunlight, even relationships. She lived a quarantined life, away from the company of friends. She filed a leave of absence from school for one whole term. Luckily for her, the academic calendar had shifted.
While her body made every effort to heal, Trisha’s emotions remained in shambles. She felt alone albeit under the watchful eye of her family. She felt lonely while in the company of other people who visited her in her home.
For the first time in her life, Trisha felt ugly, and worse, chained and confined to a disease she knew she would have to deal with for the rest of her life.
The scale and complexity of the treatments forced Trisha’s life to take another drastic turn. She suddenly realized that even her relationships will have to change. She told herself that she cannot be with someone who cannot accept her for who she is, what she has.
Trisha recalled the words of her mother, “Alam mo, anak, you have to be picky when choosing a partner in life.”
“Maybe in the future, I may end up alone,” Trisha said. “Maybe, but I’m also hopeful that perhaps, there is someone out there for me. I love this quote: ‘Lucky are those who have found love the first time, but for the rest of us, we keep trying.’ I love that quote so much. It keeps me hopeful.”
To beat the odds and the surge of depression, Trisha kicked off a routine study and research on lupus. This proved too difficult at first. Knowing more about the disease only roused feelings of self-pity, but only at the start.
In time, Trisha knew she had to toughen up in order to get a handle on her condition. All her life, she was a voracious reader. And so she read and read—and read—until she was fully informed about her illness.
Regardless of her disability, Trisha vowed to never let lupus get in the way of what she had always wanted to do. But baby steps first: while undergoing treatment, she went out of her way to get a Voter’s ID so she could vote come elections of 2016.
“I have to thank my modelling career because if not for modelling, I would not have learned the confidence I need to overcome lupus,” Trisha said. “Many things have changed in my life. After being told I have lupus, I started having nightmares. Dark dreams. Often, I would wake up crying. Sometimes, I would wake up suffering from palpitations in the middle of the night. I would turn to my pillow and see there a bunch of my hair. Once I lost so much hair that the left side of my head went bald. When this happens, I choose rather to stay indoors, in my room. I think what pains me most is when I see my colleagues in the industry doing what they love best, the very same things I cannot do. It triggers my depression and low self-esteem.”
As for her hair, Trisha and her mother sought the assistance of a hairstylist. Apparently, coping was difficult, but not impossible. She wanted so much to succeed, to manage her condition, that she welcomed any assistance extended to her.
“I’ve always been a very strong person,” Trisha related. “My parents, well, they’re not the sweet type. My Mom and Dad were always straightforward, never failed to reassure me that I can do it. They raised me to have confidence in myself. I was in grade school when I learned to commute. They want us to be open-minded, to have the intelligence to choose, make decisions for ourselves. Above all, they taught us to love ourselves above all. That probably came off as selfish, but that’s how it is with us. That’s also probably why, in high school, while others were having boyfriends left and right, I didn’t. They said I was intimidating because I was a goal-getter. I was so busy with my extracurricular activities that I felt I didn’t need one. I felt I didn’t have time for it.”
Raised to believe that life was nowhere close to being a fairy tale, her father’s wisdom taught her to take things at face value. “Pakatotoo ka” was a phrase she often heard her father say. Her parents’ honesty taught her to be honest with herself. Hence, self-pity was not an option.
To have a fresh start was harder than she thought. For some time, Trisha admitted she was in denial. During a church service, Trisha was confronted by a woman who asked her if she was sick. At the time, Trisha had a face mask on. She lashed out, saying, “Do I look like I’m sick?” She was furious at God and the world, even questioned why she had to suffer the pain of an incurable disease.
Deep inside, though, Trisha had hoped for an answer.
Trisha’s daily struggles form part and parcel of a life worth recalling, especially when she’s helping others cope with the same disease. “Lupus never goes away,” she said. “It never goes away. The flares happen time and again. You’ll know through blood works and tests. But the physical signs are the sudden fatigue and the pains.”
Notwithstanding all that she has been through, after five years of school, Trisha finally graduated from De La Salle University. “I’ve been in college for five years. I was in Organizational Communication first, before I shifted to Philippine Studies Major in Mass Media. I shifted because I already had lupus by then and my doctors and I decided to shift to a less stressful course in 2016. It would be better for my health.”
Trisha also finished a class for Journalism for UC Berkeley as one of the program’s selected students. Returning to class, of course, posed a bit of a problem for Trisha, who was losing her hair due to her continuing treatment. Suffice it to say that Trisha cared little for what people may say or think. She simply soldiered on.
The real turning point arrived when Trisha was commissioned to personally write her story for a publication. As was expected, it reached those who were also suffering from lupus. By then, she had overcome the discomfiture that came with the illness. They came to her for advice. They traded experiences, even shared the latest in pharmaceuticals and steroids needed to fight the disease.
She likewise received invitations to talk in Miriam College, ManuLife, and San Beda. What once stood as a reason for depression and sadness ultimately became her ticket to helping other people.
“They’re just small things, but for me, big deal na rin siya, especially to people going through tough times. I’m happy whenever I get to do it, whenever I get to talk about my experiences, and whenever people ask questions because, at least, I keep them informed,” she said.
Barely knowing what was in store for her after having survived her ordeal, Trisha one day got the surprise of her life. She received word that she would grace a billboard by Ultherapy.
“I was surprised when offers to model increased in spite of my having short hair,” Trisha said. “I couldn’t believe it at first, but offers to model went up after I got sick. True, time and patience heal all wounds. The time I spent getting better, I knew I had to be more patient. It helped me to be physically well and to think more deeply about my condition and the condition of others. I reconnected with people, I improved on my writing. I joined organizations in school—my first time. Before, my life was just modelling and school. I sensed a depth in my life that wasn’t there before. I got to meet new people. My life totally changed, completely, all around after I got sick. It also paved the way for my family to be closer. In fact, I’m happy when people call me a ‘woman of substance’”.
Little did Trisha know that terror was lurking just around the corner. On Sept. 30, 2018, months before her graduation, a massive seizure struck while she was asleep. Days prior, she was busy with her thesis. She was also under heavy medication due to recent flare ups of lupus, swollen lymph nodes, and possible tuberculosis. She was in and out of the hospital. Months earlier, she was also offered a job under KCAP. Needless to say, stress had finally caught up with her.
At the hospital, Trisha fell into a coma. Doctors later rushed to revive her after her heart stopped beating. For one whose life was just about to start, that incident was anything but trivial.
“Not all lupus sufferers are the same,” Trisha said. “It’s a case to case basis. There are those whose dire conditions force them to work at home. Others just stay at home, doing no work at all. There are those who refuse to give up working in an office. I want to be the latter, as the person who continues to work. I still have things to do, aspirations to reach. And God knows it.”
Given the extent and gravity of her illness, Trisha’s triumphs are hardly modest, let alone trivial. For this woman of ineffable courage and substance, the future, regardless of her illness, can not be anything but bright.
Lupus may stalk her at every turn, turn even her brightest dreams into the darkest nightmares for the rest of her life. But for this woman who could shape her ashes into gold, this life she now shares with others, though fraught with peril, would remain what it was meant to be from the start: a beacon of light. G
Fast facts on Lupus
Lupus. It’s a disease that strikes without warning.
According to the Center for Disease Control in the United States, the trigger that causes this disease is still unknown.
“Lupus occurs when an unknown trigger causes a person’s own immune system to attack their tissues, damaging the tissues and producing widespread inflammation,” said the official website of the CDC on the disease.
Lupus, the CDC explained, is a “chronic, autoimmune disease that can damage any part of the body. Lupus is more common among women of childbearing age, ranging generally from ages 15 to 44 years.
Since the cause is still unknown, it is a much feared disease. And what makes it still fearsome is the fact that scientists and medical experts still do not know how to cure it.
“There is no known cause or cure for lupus; however, treatments are available,” the CDC said.
Though the cause of the disease is unknown, there are several symptoms that may indicate if one has lupus.
LUPUS SYMPTOMS
According to the CDC’s Office of Women’s Health website on lupus, this disease can affect almost any organ in the body.
Since that’s the case, the symptoms of lupus can differ from person to person.
“For example, one woman with lupus may have swollen knees and fever,” the CDC Office of Women’s Health website said. “Another woman may be tired all the time or have kidney trouble. Someone else may have rashes. Over time, new symptoms can develop or some symptoms may happen less often.”
This means that lupus symptoms essentially appear and then disappear.
“Lupus is a disease of flares (the symptoms worsen and you can feel ill) and remissions (the symptoms improve and you feel better),” the website explained.
Generally, the symptoms of lupus are the following:
Muscle and joint pain. Common areas for muscle pain and swelling include the neck, thighs, shoulders, and upper arms.
Fever above 38 degrees Celsius. This fever is often caused by inflammation or infection
Rashes. These appear in the arms, hands and face.
Chest pain when breathing deeply.
Hair loss.
Sun or light sensitivity.
Kidney problems. According to the CDC, “half of people with lupus also have kidney problems, called lupus nephritis. Symptoms include weight gain, swollen ankles, high blood pressure, and decreased kidney function.”
Mouth sores. These can appear on the roof of the mouth, gums, inside the cheeks and on the lips. “They may be painless or you may have soreness or dry mouth,” the CDC said.
Prolonged or extreme fatigue.
Anemia.
Memory problems.Some people with lupus report problems with forgetfulness or confusion.
Blood clotting. You may have a higher risk of blood clotting. This can cause blood clots in the legs or lungs, stroke, heart attack, or repeated miscarriages.
Eye disease.You may get dry eyes, eye inflammation, and eyelid rashes.
DIAGNOSIS AND TREATMENT
The blunt fact is that lupus is a chronic disease with no cure. However, it is possible to have a fulfilling life despite having the disease.
The CDC’s Office on Women’s Health explains that those who have lupus can manage the disease with treatment.
“Treatment can help improve your symptoms, prevent flares, and prevent other health problems often caused by lupus,” the website said. “Your treatment will depend on your symptoms and needs.”
The key is to have an accurate diagnosis of lupus. Since it has several symptoms similar with other illnesses, lupus can be hard to diagnose.
There is no single test that can tell if a person has lupus or not, the CDC bluntly explained.
But consulting a physician is the first step towards an accurate diagnosis.
A physician can often use a person’s medical history as a gauge.
“Tell your doctor about your symptoms and other problems. Keep track of your symptoms by writing them down when they happen. Also, track how long they last,” the CDC said.
A person’s family history would also be another indicator. Autoimmune diseases can run in a family.
A person can also have a complete physical exam to determine what other visible symptoms are present, such as rashes.
Blood and urine tests are also used to determine the presence of “autoantibodies of lupus,” the CDC added.
Skin or kidney biopsy may also be conducted to check for signs of an autoimmune disease.
These tests, the CDC explained, can be used to help a doctor make a diagnosis and rule out other diseases whose symptoms are similar to lupus.
TREATING LUPUS
Though there is no known cure for lupus, there are treatments available to improve one’s symptoms. These treatments, the CDC pointed out, depends on a patient’s symptoms and needs.
The CDC explained that treatments are designed to prevent flare ups, treat symptoms when they happen, and reduce organ damage and other problems.
“These may include medicines that reduce swelling and pain, reduce damage to joints, and reduce organ damage,” the CDC said.
A physician will determine which set of specific treatments needed for each individual case of lupus.
The CDC also acknowledges the existence of alternative medicine.
“Some people with lupus try creams, ointments, fish oil, or supplements they can buy without a prescription. Some people try homeopathy or see a chiropractor to care for their lupus. Some people with lupus who try these types of treatments say that they help,” the CDC website on lupus said. “Research studies have not shown any benefits to these types of treatments. And research studies have not been done to see if these treatments hurt people with lupus.”
The bottom line, the CDC emphasized, is that the person with lupus must consult a doctor before trying any alternative medicine.
Medical research on lupus is still continuing to determine its cause, develop better treatment methods and, hopefully, find a cure.
