‘We are not contagious’
By Nickky Faustine P. de Guzman
In a country that worships white flawless skin, the Philippines is a big runway for peacocking: show off your porcelain skin in skimpy garments and get admiration. Those with less than perfect skin are left hiding in the shadows.
“Unpredictable and irritating, psoriasis is one of the most baffling and persistent of skin disorders,” says the disease description onWebMD.com. “It’s characterized by skin cells that multiply up to 10 times faster than normal. As underlying cells reach the skin’s surface and die, their sheer volume causes raised, red plaques covered with white scales. Psoriasis typically occurs on the knees, elbows, and scalp, and it can also affect the torso, palms, and soles of the feet.”
The damage caused by the incurable auto-immune disease is beyond cosmetic. In the face of society’s judgment, a victim can suffer crippling blows to his self- esteem.
“We are vilified,” said Josef de Guzman, his voice almost trembling.
Psoriasis cut short his booming career as a sales and marketing professional in 1996. While he could initially cover his psoriasis with long sleeves, the condition also affected his hands and nails. He said that whenever he’d do presentations or offer a handshake, people would stare at his hands. So he quit because he was ashamed. He lived a reclusive life for a long time.
Eventually he decided to focus on working as an advocate for sufferers of the disease, and went on to conduct other campaigns on cervical cancer, epilepsy, schizophrenia, and hemophilia, among others.
In 2005, he started Psoriasis Philippines (PsorPhil), an online support group which has attracted 5,000 members, with the goal of giving encouragement to its members while educating the wider public on what psoriasis is.
“Imagine if you have a small pimple on your face. Ayaw mo na lumabas kasi nakakahiya (You do not want to go outside because it’s embarrassing.) Multiply that one blemish into 1,000 more pimples — that is how we feel.”
He, and the rest of the PsorPhil members, cannot overemphasize that like any ordinary pimple, psoriasis is not contagious.
“We’ve put too much premium on people with flawless skin. We put them on a pedestal. But what are we trying to tell people with psoriasis?”
If a person with flawless skin is beautiful, the corollary is that a person with psoriasis is ugly.
Pamela Velasco, 24, fit the profile of society’s standard of pretty: white and flawless skin, tall, long hair. She’d join beauty contents and wanted to be a model. Then everything went wrong.
“I was only 13 years old, a first year high school student, when one day I woke up with a body covered with flakes and white and pink spots.Parang gumuho mundo ko. (My world seemed to collapse.) I used to join school pageants. That time I knew what I wanted, I wanted to be a model, a beauty queen. I loved to act and dance. I wanted to be a newscaster just because I wanted to see myself on TV,” she toldBusinessWorld in an e-mail interview.
Mr. De Guzman and Ms. Velasco suffered emotional breakdowns.
“After learning I have this lifelong condition, my self-confidence went down to zero. I became lazy and tired of life. I tend to hide as long as I could. I was physically, emotionally, and mentally damaged. I used to cry at night or super yuko na lang ako ‘pag dadaan sa iba. (I hunch down when I passed by other people). Ang tagal kong na-depressed at na-stressed, umiiyak at nagtatago lang. (For a long time I was depressed, stressed, and crying. I hid.) Sometimes I even refused to attend school.Hindi siya mabilis tanggapin. (Accepting it was not easy),” said Ms. Velasco.
According to an Italian study by dermatologists Esposito, Saraceno, Maccarone, and Chimenti, psoriasis has psychosocial co-morbidities like anxiety, poor self-esteem, depression, sexual dysfunction, and suicidal ideation.
“It hurts physically, emotionally, and mentally,” said Ms. Velasco, who is a PsorPhil member.
Mr. De Guzman said that sometimes he wanted to “vanish.”
Both said they can tolerate the physical pain of the condition, but not its psychological torment.
They appeal to people’s humanity: “Please tell the world we are not contagious.”
CONTROLLABLE CONDITION
“The treatment depends on each patient,” said Maria Deanna Santos-Ramiscal, photodermatology head at St. Luke’s Medical Center, Bonifacio Global City, in a press conference on May 31.
“The treatment depends on each patient,” said Maria Deanna Santos-Ramiscal, photodermatology head at St. Luke’s Medical Center, Bonifacio Global City, in a press conference on May 31.
PsorPhil, the Philippine Dermatological Society, Novartis Healthcare Philippines, and the Philippine Rheumatology Association (PRA) signed a memorandum of agreement during the event with the aim of increasing public awareness of the disease.
Dr. Ramiscal said 20% to 30% of the world population experiences psoriasis, usually on the scalp, elbow, knees, and areas prone to trauma. She said that approximately two million Filipinos are suffering from psoriasis, but 60% of them won’t receive treatment.
Treatments are expensive. Topical creams, which last for about a week, costs P2,000 or more. Another option in the market: secukinumab biologics. The drug inhibits IL-17A, a protein that causes the excess scaling of the skin. Dr. Ramiscal said patients have shown improvements of up to 90% after several weeks of injections with the drug, which is US Food and Drug Administration-approved. It’s a more effective psoriasis management option. But the doctors demurred from giving an idea on how much it cost, saying it depends on the doctors and hospitals.
Arthritis, as well as heart disease, diabetes, and depression, are often suffered simultaneously with psoriasis.
There are several types of psoriasis, the most common being plaque psoriasis which is characterized by thick and extensive skin lesion which are itchy and painful. According to WebMD, psoriasis can also be associated with psoriatic arthritis, which leads to pain and swelling in the joints.
“Up to 10% of Asians with psoriasis are diagnosed with psoriatic arthritis, a specific form of arthritis that is particularly painful and debilitating and can lead to joint damage,” said Dr. Heizel Reyes, PRA president.
Mr. De Guzman mentioned he has a friend with psoriatic arthritis who broke his fingers after crumpling a piece of paper.
Patients undergo cycles of remissions and flare-ups over a lifetime. An episode can be caused by a variety of factors that include emotional stress and infections. “Most doctors believe such external stressors serve as triggers for an inherited defect in immune function,” says WebMD.
The doctors at the press conference emphasized case-to-case treatment. “There’s no one-size-fits-all in managing psoriasis,” they said.
A MATTER OF ACCEPTANCE
Since the world has not yet found the cure for it, people with psoriasis are left to simply deal with it.
Since the world has not yet found the cure for it, people with psoriasis are left to simply deal with it.
“Matagal din talaga bago ko siya natanggap. (It took me a while before I accepted it),” said Ms. Velasco.
“Acceptance is the key. ‘Pag natanggap mo na si psoriasis, tanggap mo ng habang buhay mo siya kasama, mas gagaan ang buhay living with it.” (Once you’ve accepted that psoriasis will be part of your life, it will make living with it easier.)
She said she started living a healthier lifestyle. She exercises and sticks to a gluten-free diet. It also helps to have support: a family member, a friend, or people suffering from the same disease.
“I have learned the art of dedma (ignoring). Nowadays whenever I go out, wherever I am, I always keep my head up. I stand tall and proud. Sometimes I smile at people looking curiously at my skin. I am now confidently beautiful with my psoriasis. I did not stop performing, I was able to achieve my dream of joining beauty pageants and modeling gigs.”
She said she does not conceal her psoriasis with foundation or concealer. She likes her skin bare.
“I believe I can now handle discrimination. I am now a fighter.”
But more than them accepting that their battle with psoriasis will be life-long, it’s society’s acceptance that would make it a little more bearable. The world has not yet found a cure, but perhaps, our understanding brings them a step closer to healing.
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