Showing posts with label psorphil. Show all posts
Showing posts with label psorphil. Show all posts

October 26, 2017

Facts about Psoriasis

Do you know that there is World Psoriasis Day? Yes, this is a worldwide event where people around the world celebrate the WPD to give voice to millions of people who have psoriasis and I’m one of those people who have psoriasis

In the Philippines, we have National Awareness Week from October 23-29 since 2011 via Presidential Proclamation. But before that, PsorPhil is already celebrating World Psoriasis Day every year. People who have psoriasis, doctors, family and other supporters gather together to spread awareness about this skin condition.

This year, it will be celebrated on October 29, 2017 at San Andres Sports Complex. I haven’t joined all the parade but I was able to attend 2010, 2012, 2014 and hopefully this year, I can attend WPD event. 

If you have psoriasis or if you know someone who has psoriasis, let them know that there is a PsorPhil group or different clubs around the Philippines where you can join so you won’t feel alone. I am a member of Asian Psorclub so if you live in Laguna, Cavite, Las Pinas, Muntinlupa, Paranaque or anywhere in South, you can join our group. 

Anyway, since this is National Awareness Week let me inform you about psoriasis. I saw this flyer while I was cleaning. This is the flyer that we’re giving away during our Word Psoriasis Day walk.



Psoriasis in Numbers

Psoriasis affects 1-3% of the world’s population. (Clin. Dermatol. 2006;24;438-47) 
1.8 million Filipinos may have psoriasis. Psoriasis affects adult males and females equally. 
Studies have shown that 36-71% of patients with psoriasis have one relative who is also affected by psoriasis. 
Up to 10-20% of patients with plaque psoriasis also experience psoriatic arthritis. Psoriatic arthritis develops in persons aged 35-55 years old. 
Approximately 50% of psoriasis patients >65 years old have at least 3 comorbidities and -67% have 2 or more comorbities, -10% of patients have ocular signs (blepharitis, conjunctivitis) which is more common in men than in women. (R. Arffa, MD, emedicine.com 2009) 
On the average, people with severe psoriasis have shorter life span of 4 years than patients without psoriasis, 3.5% years for men and 4.4 years for women. (Arch Dermatol. 2007;143(12):1493-1499)

Facts about Psoriasis 

What is psoriasis? 

Psoriasis is a common, chronic, relapsing, inflammatory skin disorder with a strong genetic basis. It is characterized be red, raised, itchy patches, with silvery scales, which can occur on any part of the body. 

Psoriasis is not an infection and therefore is not contagious. 

What causes psoriasis? 

The exact cause of psoriasis is still undetermined. Psoriasis occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells. Again, psoriasis is not caused by an infection and not contagious. 

What triggers psoriasis? 

The development of psoriasis has undoubtedly a genetic component, but certain environmental factors may also trigger the disease. These factors may include physical trauma, infections, stress, drug, alcohol, and cold climate. 

Is there a cure for psoriasis? 

At present, doctors cannot cure the disease, or even modify the course illness. Current treatments do not affect disease activity. This means that if the disease is active, then relapse will occur as soon as treatment is discontinued whatever therapy is used. 

However, psoriasis can be cleared with treatment that is currently available. 

Other Important Information about Psoriasis 

Psoriasis, being a common, chronic, complex inflammatory disease shares immunological features with other serious health disorders. 

Recent studies suggest that moderate to severe psoriasis is associated with comorbidities like metabolic syndrome and its components (obesity, diabetes, hypertension, hypertriglyceridemia), cardiovascular disease, Chron’s disease, chronic obstructive lung disease, depression, and inflammatory arthritis among others. 

Considering the link between psoriasis and comorbidities, it pertinent that a patient be aware of importance of regular follow-ups to their health care providers in order to be monitored for the said risk factors. It is also important for patients to adapt healthy lifestyle choices, including diet and exercise, to help prevent the development of comorbidities. 

Aside from these serious medical disorders, people with psoriasis are faced with a psychological and emotional burden aggravated by lack of awareness regarding the disease. Many of them face discrimination in public places like the hair salon, riding public transportation, workplace, swimming pools, and the like. It is important that people be made aware that psoriasis is not contagious and cannot be passed on by physically interacting with a person with psoriasis. Psychological and social support from family members, friends and support groups are very significant in decreasing the isolation of patient feels and increasing his/her confidence in living well with psoriasis.

January 19, 2017

Unfolding Psoriasis in the Philippines: A Burden of Disease Survey

This survey aims to collect data from Filipinos living with psoriasis above 18 years old to better understand experiences in diagnosis, management, and quality of life impact. This survey is developed for the Psoriasis Philippines in collaboration with Philippine Dermatological Society and Philippine Rheumatology Association supported by Novartis. 

Specifically, the survey aims to: 

1. Understand the rational, personal and emotional impact of psoriasis; 
2. Quantify patient perspectives on clear skin achievability; and 
3. Provide evidence for the significant impact of psoriasis on individuals. 

The data will be used to raise awareness on psoriasis in the Philippines and to develop a policy paper for psoriasis treatment and support.

If you have psoriasis, please answer the survey. If you know someone who has psoriasis, please share this post.

Click here to answer the survey.




October 29, 2014

Building a Better World for Filipinos with Psoriasis

I was in my fourth-year college when I was diagnosed that I have psoriasis and sad to say that it has no cure yet. At that time, I had a mild case of psoriasis so I can say that I have still a normal life because people cannot see my psoriasis yet. I can do anything and I can wear any clothes, but things change after I gave birth to my son. 

I have psoriasis all over my body and I can’t even count them. I experienced severe psoriasis last year, see the story here.  Having this skin condition really changed my life and I always wish that someday I would have normal skin again. So I can do anything and I can wear anything I want. 

I’m grateful that my family and friends accept and support my skin condition. I’m also a member of Asian PsorClub and PsorPhil group so I know that I’m not alone in this battle. 

Every year, PsorPhil celebrates World Psoriasis Day and I really try my best to be part of this event. So far I’ve attended three funwalk since 2010. I attended the funwalk in 2010 and 2012 and last Sunday, Oct. 26, 2014.

Just to give you an idea “World Psoriasis Day is a yearly event dedicated to people with psoriasis/psoriatic arthritis. This is a global event wherein people around the world perform activities to give an international voice to the 125 million people with psoriasis/psoriatic arthritis. 

IFPA ( International Federation of Psoriasis Associations) would like to raise awareness about psoriasis so people won’t be discriminated. It aims to improve access to treatments, increase understanding about the skin condition and unite different psoriasis groups so people with psoriasis will get the attention and consideration they deserve.” 

In the Philippines, since 2011 we have National Psoriasis Awareness Week (23-29 October) via Presidential Proclamation. Last October 26, 2014, we celebrated World Psoriasis Day at San Andres Complex. People with psoriasis, families, doctors, and other supporters were there. 


Aside from the funwalk, PSorPhil group offered

1. FREE Consultations c/o Philippine Dermatological Society Doctors with Free medicines (as supply lasts)
2. FREE consultations with RHEUMATOLOGISTS c/o PRA (for PsA)
3. FREE BP measurement, Sugar BMI Cholesterol Urinalysis, and consultation with same-day results c/o Pfizer
4. FREE Chair massage service 

There were also cheering competitions by different psoriasis clubs, raffles and Zumba party. 


It was a fun event and I hope we can really build a better world for Filipinos with Psoriasis because we want a normal life. Psoriasis is not contagious.

December 27, 2012

Asian PsorClub Christmas Party


Christmas season is indeed a stressful season and stress is not good to me so I don’t attend all invites that I received. As much as I want to attend I have to prioritize things and attending events is not my top priority. I don’t want to waste my time travelling from one place to another because of the traffic.

This Christmas season, I only attended two events and one of them is Asian PsorClub Christmas Party. I missed the November get together because of my last minute preparation for our Hongkong-Macau trip.



It was just a simple get together but we had fun eating and singing. (oops, I did not sing.) We brought exchange gift and white elephant gift.


Photos from our Facebook Group.

November 07, 2012

Put the Philippines in the Psoriasis Map

Photo Source: PsorPhil Facebook Group

FYI: “125 million people worldwide have psoriasis, yet psoriasis remains a largely hidden disease”

If you have psoriasis or if you know someone who have psoriasis, click here and enter your name and location. Be counted and share your story to raise awareness. 

October 23, 2012

FunWALK and FunGAMES


World Psoriasis Day is a yearly event for those people who have psoriasis like me so last Sunday we went to Maysilo Circle in Mandaluyong City to join the Funwalk and Fungames of PsorPhil. Actually, not only psoriasis patients were present because even doctors, sponsors, supporters, and other volunteers joined us to promote the global theme “Put Psoriasis on The Agenda Now” and of course to tell the whole world that psoriasis is not contagious.

I became a member last 2010 and this was my second time joining the funwalk. I was happy because my husband and my son always accompany me even if it is more than an hour of walking. 

Photo from PsorPhil group
After the fun walk we had parlor games and we were lucky to win the sack race game. Go Asian PsorClub!

Click here if you want to know more about psoriasis. 

If you have psoriasis, join our group here and register here.

P.L.A.N.E.T.

I was one of the lucky participants of P.L.A.N.E.T or Psoriasis Livelihood Assistance Network and Training. If you’ve been reading this blog, you know that I have psoriasis and I’m a member of PsorPhil group. One of the visions of PsorPhil is to help and support people with psoriasis. For your information, we have members that are unemployed, they were either terminated or they can’t find a job because of the skin condition so it is PsorPhil aims to help members by providing livelihood assistance and training. PsorPhil hopes that this training can help them to earn.

I was able to attend the Basic Web Designing and Basic PC troubleshooting training at Hope Christian High School in Sta. Cruz, Manila last Oct. 13 and Oct. 20, 2012. It was half day training so don’t expect that I can do web design or troubleshoot computer already but at least I’ve learned the basics. Now, I know and understand some html and css terminology and I’ve tried to assemble and disassemble computers. I just hope there’s a continuation of this training.




This was the second livelihood assistance that I’ve attended the first one was soap making, jewelry making and loadingbusiness.

If you have psoriasis, join our group here and register here.

Photos from PsorPhil group. 

October 21, 2012

World Psoriasis Day 2012

Leo Pharma Asia’s Top Executive to join National Psoriasis Week

Ricky Teo, a top-ranking executive of LEO Pharma-Asia will grace this year’s celebration of the National Psoriasis Awareness Week at the Kaban ng Hiyas of the Mandaluyong City Hall.

The annual event, a testament to the importance of Presidential Proclamation No. 179 declaring every last week of October as the National Psoriasis Week, will carry the global theme “Put Psoriasis on The Agenda Now” for this year’s celebration.

Despite his hectic schedule, Teo, Leo Pharma-Asia’s Area Director for South Asia, will join the national events as a show of support for the region. Teo is responsible for Leo Pharma’s markets in the Philippines, Malaysia, Thailand, Taiwan, Singapore, Hongkong, Vietnam, Indonesia, and Sri Lanka.

Teo will discuss the topic of the stigma of psoriasis why a great number living with it take their own lives to escape the suffering that it entails and why is this the only solution they see. He will also post the question of why in a world where beautiful and clear skin is the benchmark of beauty, psoriasis patients are being treated negatively because of the inflamed, thick red scaly lesions found in their skin.

Most people think that the physical symptoms of psoriasis patients are contagious and people tend to ostracize patients with psoriasis. These instances lower the self-esteem of the patients and they shy away from the public, hiding from the judging eyes of the outside world. They hide in their homes and most patients fall into depression.

About 30% of Psoriasis patients develop painful and debilitating psoriatic Arthritis. Their quality of life is lessened and can’t do some of the simple things that most people take for granted in their daily lives. Recent global studies also show that psoriasis patients are at higher risk of developing other co-morbid conditions such as hypertension, diabetes, cardiovascular diseases, Crohn’s Disease, and other chronic conditions.

Psoriasis Philippines, along with Leo Pharma and Teo, advocates for the Filipinos with psoriasis who are estimated to be between 1 to 2 million. Every year Psorphil celebrates World Psoriasis Day together with 64 other countries.

This year's Psoriasis Awareness Week is also supported by Pfizer Phils, Janssen Pharmaceuticals, and Galderma Phils. and Pascual Laboratories.

July 31, 2011

Repost: Why Your Support For The PsorRocks Is Critical



I’ve read this note from our PsorPhil’s President (Josef De Guzman) and allow me to share it with you.  
"We were a small group of 5 people with psoriasis who only wanted a venue to vent out our frustrations, share our dreams and articulate our hopes.  Subsequently, an online support group for Filipinos with psoriasis was born – Psoriasis Philippines. 
I still remember a call from a stranger regarding his female friend who, because of severe depression, was about to take her life because her family do not understand why she acquired lesions on her skin. They thought she was cursed. [However, scientific studies say that having psoriasis may be attributed to genetic predisposition.]  Out of fear that she might infect them, her family drove her away. That was Christmas time, six years ago.
 It was the turning point of our advocacy. Soon we were extending support to many psoriasis sufferers who were on the verge of committing suicide.  Notably, more women sufferers have a tendency towards ending their life. Psoriasis Philippines continues to be instrumental in averting suicides among Filipinos living with psoriasis. 
Psoriasis Philippines’ advocacy brought us to face several issues that are mostly discriminatory.
  • Take the case of Ana (not her real name), 15 years old. Ana had to quit school because of Psoriasis.  She gets tired of being humiliated because her skin is rough.
  • Jenny (not her real name), is a young single mother who needs to work extra hard because her husband left her.  This was after he told her that he can no longer bear to touch her.
  • A pastor who had lesions on her face was not allowed to board the plane. Psorphil backed her up in bringing this matter to the court.
  • Mary (not her real name) was driven out of the swimming pool because the staff of the resort fears she may infect other customers.
  • Blanca (not her real name) was a young nursing student who was ill-advised by her dean to quit school because of her psoriasis.
If the 2million Filipinos suffering from Psoriasis will stop hiding and defy the stigma, this list can go on and on.
Having psoriasis is tough. It robs us of the very essence of our existence. And overcoming the discrimination that we face on a daily basis is no mean feat.
Psophil’s advocacy has brought us to the most remote parts of the country trying to educate the people on the grass roots level about this condition. Our hope is that one day, all psoriasis sufferers can live normally without the fear of being judged and discriminated.
We can only do so much right now. However, we need help to sustain our programs and projects that are aimed to improve the quality of life of our co-sufferers. But unfortunately, it is taking its toll on our volunteers and members who are already spending their own money just to push our advocacy. 
On August 20, 2011, we are putting up a concert at the Baypark Area, Service Road of Roxas Boulevard (near Raha Sulayman plaza) billed as PsorRocks to raise funds to ensure that our projects can go on.  Several popular bands are playing for free to support us: CallaLily, Slapshock, 6 Cycle Mind, Cueshe, Even, General Luna, Grace Note, Kenyo, Up Darma Down and others. Party music will be played by DJ Buddah after the concert.   We seek the support of everyone to allow us to continue our goal of serving the Filipino Psoriasis sufferers. Hope to see you at the concert. 
For more details, please call PsorPhil office at 8893596, 3794290, 09228297767"


Twenty more days before the PsorRocks concert, I hope you guys can be part of this advocacy.



July 27, 2011

Celebrities with Psoriasis


I always say that having psoriasis is not easy because once you have it you have to deal and live with it. Most people are not aware about this skin disorder and some people may not understand how difficult for us to live a normal life during our break out.

Some people dreams to have a fair complexion and willing to spend thousands just to have a smooth and white skin. But people with psoriasis like me spend thousands just to have a clear skin and free from psoriasis. I only have one wish, (for 3 years already) that someday I will be able to wear my shorts, skirt and swimwear again. Someday, I can wear anything that I want just like before and someday I will enjoy the beach and swimming pool without thinking that people might see the red patch on my skin.

That’s how conscious I am when I am not at home, I am afraid of what people might say and feel about me if they know that I have psoriasis. So I really understand these celebrities who have psoriasis and I am happy that they come out in the open to show the world that psoriasis is not contagious.

photo from google
CariDee English is the 2006 winner of "America's Next Top Model" – click here if you want to see her story and she even reveals some of her pictures.

photo from google

LeAnn Rimes, the two time Grammy Award winning singer and actress who have psoriasis since she was two years old. Her full story here.

photo from google

And the latest celebrity who was diagnosed with psoriasis is no other than Kim Kardashian. Click here for the latest news.


I do not have any idea if there are local celebrities who have psoriasis.

July 01, 2011

Psor Rocks



For the past ten years of my life, I have this skin disorder called psoriasis. Not all people are aware of this skin disorder because only 1-3% of the world’s population has psoriasis. I am one of the 1.8 million Filipinos who have this and sadly to say, there is still no cure for this skin disorder but it is not contagious.

Having psoriasis is not easy; it turned my life upside down. I even questioned God, why He gave this to me. Then I realized that I have no right to question Him because He has His own reason for everything. Acceptance is the first thing that I need to do and sometimes it is like an everyday battle that I have to face. I am so blessed for having family and husband who accepts, understands and loves me in spite of having psoriasis.

People with psoriasis are not just facing serious skin disorder but also discrimination in public places such as hair salon, schools, workplace, swimming pools, transportation and many more. It is really tough to have psoriasis especially if people are not aware of this.

Psorphil will be having anniversary concert entitled Psor Rocks (Music. Equality. Belonging. Respect. Love). “People with psoriasis standing against discrimination through music”.

So join us in our fight against discrimination. Let us celebrate life, love, respect and equality through music.

August 20, 2011
8:00PM
Bayview Service Road, Roxas Blvd.



VIP P1000
Gen. Admission P100
Tickets will be available at SM Tickets soon.
You can also donate through SM tickets for the benefits of the Psoriasis Philippines
470-2222

Thank you Calla Lily, 6 Cyclemind, UP Dharma Down, Kenyo, Gracenote, General Luna, Even and Slap Rock

April 19, 2011

Beauty, Money and Wellness

BMW (Beauty, Money, and Wellness) is one of the PsorPhil projects to help psoriasis patients in restoring their sense of wholeness and well-being by giving and pampering them with information through workshops and lectures such as beauty, money, and wellness management that will improve psoriasis patients self-sufficiency.
This is my first time joining BMW and it was held in Morong Star Beach Resort and Hotel last April 16, 2011. There are so many participants from different PsorClub in the Philippines such as RITM, AHMC, JRRMMC, SLMC, EAMC, SCF, OM, MMC, UERMMC, PGH, USTH, and PsorPhil members on Facebook.


It is a whole day activity for everybody. There is Beauty Talk, Money Talk, Motivational Talk, Livelihood Trainings and Demos and Meditation.  
Beauty talk by Marj Platilla and Dra. Maf 
Money talk by Edwin De Guzman
Motivational Talk by John Brian Diamante
Salad Making by Chef Arjun Binalla
Livelihood Training and Demos are Soap Making, Jewelry Making, and Loading Business.
Meditation by Kathy Tan  

There are also raffles and freebies for everybody. Too bad for me, I did not win in the raffle. I paid P325 only, thank you to all the sponsors, moderators, and Psorphil officers for making this trip possible.


 


March 09, 2011

World Psoriasis Day 2010

It has been 9 years since I had psoriasis, sad to say that there is still no cure for this skin disease but it is not contagious. It is really a struggle for me to accept that I have this because there is no one in the family who has psoriasis so I still have no clue where did I inherit this.
Two years ago when I started to feel depressed because it is all over my body, I really feel so sad because I am doing everything just to prevent the flare-up, I tried all the topical medications and even phototherapy but there is no improvement. Having psoriasis is not easy because the medicines and treatments are not cheap.
But I still thank God for giving me the strength to go on and making me realize that I am not alone. It is true that I am not alone, for the past few years, I thought that I am the only one who have this in the Philippines, and thank God that I was able to join Asian Psoriasis Club, where I met other people who have psoriasis. It gives me relief that there is someone who can really understand my situation.
So when I heard that there is Fun walk on October 20, 2010, I did not think twice because I really want to be part of this and show the world that Psoriasis is not contagious.
courtesy of likha camera club


 

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