THE FACES OF PSORIASIS INCLUDE KIM KARDASHIAN AND CYNDI LAUPER
He was goodlooking, a successful sales and marketing man at a multinational company, with almost everything at his fingertips until psoriasis struck and took away everything, including his precious dreams. He left his job and his family, and lived like a hermit for two years, away from the glare of public scrutiny.
“Maybe on a different level, but just the same, I’m one of those discriminated, who try to hide their condition, who once lived like a hermit and probably tried suicide more than a few times,” Josef de Guzman shares his personal psoriasis journey at a recent media briefing to mark World Psoriasis Day at Ace Hotel & Suites in Pasig. TO LIVE (OR NOT) ANOTHER DAY
Josef discloses, “There’s a study in Europe that was recently made that there’s 67 percent of psoriasis patients who don’t want to live another day. Those who cannot heal themselves are hoping they don’t wake up anymore the following morning. This is so real, this study was made in Spain, in Europe, a first world country — how much more in a country where people put a very high premium on beautiful skin, how beautiful skin opens doors? Where do we fit in? We want to fit in, we want to be as normal as possible.”
With a heavy heart, Josef goes on to relate, “Imagine you’re a child ... or if your child has psoriasis and wanted to play in the playground, and the parents of some kids don’t want their children to play with your kid because of fear they might get infected. Or can you imagine your child being bullied in school? So, one day, your child tells you he doesn’t want to go to school anymore because they’re teasing him — galis, galis, galis! Or can you imagine your teenage child who wants to swim in a public swimming pool, only to be driven away by the pool attendant?”
Today, Josef de Guzman has risen above his psoriasis and even formed Psoriasis Philippines (PsorPhil), an online support group for Filipinos with psoriasis, which now has 20 chapters all over the country. He fondly calls his fellow psoriasis patients “my kabalat.” Josef also sits as a board member of the International Federation of Psoriasis Associations based in Sweden.
Josef’s inspiring story was dramatized on Charo Santos-Concio’s TV drama anthology Maalaala Mo Kaya. While giving public talks is not new to Josef, this instant celebrity has yet to get used to people asking for his autograph. PAOLO BEDIONES PUTS A FACE ON PSORIASIS
Psoriasis is a common, distressing, and sometimes painful autoimmune disorder that causes cells to build up rapidly on the surface of the skin, forming thick, silvery scales and itchy, dry, red patches. It is estimated that one to two million Filipinos have psoriasis. Putting a face on the disease, TV celebrity Paolo Bediones recently disclosed to his shocked fans his longtime battle with psoriasis. On the other hand, over seven million Americans suffer from psoriasis, among whom are celebrities like Kim Kardashian, who got it from her mother Kris Jenner, and singer Cyndi Lauper.
“It’s a given that sometimes, we have the tendency to shut away people,” Josef confesses. “Sometimes, they’re not really staring at us, but at the back of our minds, mukhang nakatingin sila sa amin, parang nandidiri. We have experienced this so many times.”
His voice tinged with sadness, Josef adds, “There are so many things we want to enjoy, but society won’t allow us. So, we want to make a plea to everyone to make our world a little bigger for us.”
Josef’s plea has certainly not fallen on deaf ears. For today, at this forum moderated by Novartis’ Christine Fajardo, seated side by side are Dr. Ma. Angela T. Medina-Lavadia, president, Philippine Dermatological Society (PDS); Dr. Bernadette Heizel Manapat-Reyes, president, Philippine Rheumatology Association (PRA); Dr. Francis Victor M. Domingo, chief scientific officer, Novartis Healthcare Philippines, Inc.; and Cheryl Maley, country president and managing director, Novartis Healthcare Philippines. Everyone is visibly excited about this coalition that Josef says he hasn’t seen anywhere in the world. RAISING AWARENESS
“We’re thrilled to join together for this coalition,” enthuses Cheryl Maley. “In 2016, we first started working and the activities we were able to focus on showed the power we can do when we all work together, to raise awareness across all of the Philippines. One thing that was so powerful and still in my mind today was the photo workshop that was entitled ‘A Day in the Life of a Person with Psoriasis, Soaring above Psoriasis.’
The 130 photos were incredibly powerful as a way to raise awareness. It is this type of activity we will continue to build on as we move forward now in 2017.”
Cheryl adds, “The power of this coalition is not just about awareness but also to focus on the need for greater acceptance and understanding. And even behind the percentages, I know there’s an incredible fear for patients who suffer psoriasis to even attempt to go into a hair salon. And I can talk about this on a personal standpoint with my younger brother suffering from psoriasis.” ‘HUG ME, I’M NOT CONTAGIOUS’
Dr. Ma. Angela T. Medina-Lavadia tells us more: “Philippine Dermatological Society is composed of more than a thousand boardaccredited dermatologists all over the country, and one of our main projects is to reach out to our people to spread awareness about various skin diseases, including and especially psoriasis. To tell our people that psoriasis is not contagious, psoriasis patients can be reached and can be helped. We have been participating actively in World Psoriasis Day and various campaigns, I love this, such as the ‘Hug Me’ campaign, to prove that psoriasis is not contagious. And we’ve been having various initiatives even in Congress to put forth the benefits that are necessary for psoriasis patients. In addition, we have 11 PDS-accredited dermatology residency training programs all over the country, where patients with skin diseases and psoriasis can have free medical treatment. And we organize psoriasis clubs as support groups for our psoriasis patients.”
Dr. Lavadia stresses, “We want to reach out more to all the people of the Philippines and even to the world and tell them that there is hope for psoriasis, there are many new medications and new initiatives that we can do not only therapeutically but psychosocially as well, to help our psoriasis community.” WHY NOT ASK YOUR DERM?
Cheryl Maley is happy to announce: “We will soon launch the website which is called askyourderm.
Dr. Lavadia says that many of the queries and the articles that will be published on the website will pass through the PDS’ panel of experts.
Persons with psoriasis can probably ask their derm about psoriatic arthritis. “Up to 30 percent of patients with psoriasis have, or will, develop psoriatic arthritis, in which the joints are also affected, causing debilitating symptoms including pain, stiffness, and irreversible joint damage,” remarks PRA president Dr. Bernadetter Heizel Manapat Reyes.
Dr. Reyes elaborates, “We assume arthritis is just part of getting old. But let me tell you that we have patients in their teens who have arthritic psoriasis, and that means not being able to play, have disjointed joints, that means getting their first joint replacement surgery just when they finish college. So this is a very, very difficult condition for a lot of our patients who live with pain every day of their lives.”
Dr. Reyes laments that there are only 152 board-certified rheumatologists, vis-a-vis our 110-million population, 15 to 30 percent of whom have psoriasis. “That would mean half a million persons with psoriasis. But where do we find each other? There are very few of us and a lot of them are not really diagnosed.”
Dr. Reyes can’t emphasis this enough, “We want to let our Filipino patients know that there are psoriatic arthritis doctors, there are very effective drugs, they need not keep quiet about their condition. So, ask your derm. Tell your derm about the increasing sugar in your blood. Tell your derm about your hypertension. Tell your derm about your increased weight loss. Because most of us are internists, we don’t only take care of the arthritis but the other metabolic conditions as well.”
“Ask your derm website aims to empower patients and their caregivers in dealing with psoriasis,” says Dr. Francis Victor M. Domingo, who has published papers on diabetes and hypertension. “Through this digital platform, we are also striving to provide high quality medical education to our local physicians, as evidenced by our VivindaTV initiative that will provide local rheumatologists access to the American College of Rheumatology Annual Congress.”
Indeed, persons suffering from psoriasis need not be alone. As these driven and determined partners in psoriasis declare: We’re all in this together!