Psoriasis is always deemed as a non-life threatening skin condition, hence don’t usually get enough funding in MOH compared to other diseases such as cardiovascular or oncology. However, all of us patients have to go through the emotional stress and social stigma throughout our lives. That is more taxing on mental health on the long run. Do know that we have to dig deep to find our own inner strength to face the world daily. Let us make our voices heard. Let us all help spread the awareness of this life long condition.
Firstly, PAM would like to apologise on the silence since October/November 2019. Time is just zooming too fast for us volunteers to do more advocacy! We are officially in March 2020 with lots of uncertainties with Covid-19 outbreak and changes in Malaysia’s political scene.
Nevertheless, it’s business as usual for us psoriasis warriors and if you enjoy getting information via podcasts (best for commuting to work/school/college/chilling at home), do check out this link with lots of information on Psoriasis.
Many of times psoriasis patients wonder why should they join PAM? While we are run by 100% volunteers (and there isn’t many of us!), we can get less efficient and disorganised, we still believe in the purpose we are serving. To connect and support each other going through this long journey called Psoriasis. No one else truly understands our struggle except the next fellow patient. Through this organisation we have met amazing people that can achieve greatness despite their condition and we have met healthy individuals that give their time to support us because they feel for us. Many thanks to our medical advisors, hospitals and sponsors that have been supportive of our initiatives throughout the years. Help us normalise Psoriasis and make society aware of this condition. Do this for our next generation!
It’s time to celebrate us! The only event that allows us psoriasis patients to get to know each other and form the support system. This year we have moved to a new location with bigger space thanks to Hospital Kuala Lumpur and our generous pharmaceutical sponsors Novartis and Leo Pharmaceuticals.
Do RSVP early to secure your seats! Bring the family too as we will have activities to keep the entire family (kids especially!) entertained. This event is free for PAM members! If your membership has lapsed, this is a best time to renew (RM60 for 3 years subscription) and allows you access to all the events we organise. This token fee is use to run the association as we are entirely on a voluntary and non-paid system.
Wondering where MCNCC is? 15, Jalan 18/16, Taman Kanagapuram, 46000 Petaling Jaya, Selangor and Mr Google says it’s off Old Klang Road! https://www.google.com/maps/MCNCC
Want to sign up as a member? PAM Membership Registration
5 hari lagi sehingga kita berjumpa di Wad Dermatologi, Hospital Kuala Lumpur! Marilah kita sama-sama mendengar pandangan pakar kulit dan pakar nutrisi tentang psoriasis dan cara untuk mengawal simptomnya. Kali ini kita akan ada pameran daripada organisasi lain yang membuat sabun dan lotion yang sesuai untuk kulit sensitif. Sokongan anda amat penting supaya kita mempunyai suara yang kuat untuk tingkatkan kesedaran psoriasis di Malaysia! Kita juga akan memberi update tentang “patient survey” yang kita ingin buat untuk tahu secara lanjut beban psoriasis ini terhadap kita, sama ada dari segi emosi, diskriminasi dan lain-lain.
Be the first to know this! The event will take place on 21st July 2019 9am at Dermatology Ward, Level 2 HKL. We promise it will be an interactive session with our Panel Speakers and Members of PAM. Not yet a member? Join us today! Latest PAM registration e-form 2019
The most anticipated yearly event for our Psoriasis Association Malaysia members, family and friends is here! Mark your calendar and join us on 27th October 2018 at Level 2, Dermatology Ward, Hospital Kuala Lumpur for the fun-filled and knowledge enriching session. This event is made possible with the sponsorship from Leo Pharmaceuticals in collaboration with Hospital Kuala Lumpur.
There will be exciting activities for the young ones and family members that ensures a memorable experience for all. Most of all, this event is FREE!
Seats are limited so RSVP via Email to firstname.lastname@example.org or Whatsapp to Eugene +6019-6645494/Sofia +6017-6261111 to reserve a spot today! To be a PAM member, sign up here Latest PAM registration form 2018.
Mark your calendar as we will be having our annual celebration! We look forward to all your participation to make this event a success! We will have knowledge sharing from our Consultant Dermatologist and Clinical Psychologist and fun filled activities for family members to enjoy. We will post more information as we confirmed the final details.
Venue: Dermatology Unit, Hospital Kuala Lumpur
Date: 27 October 2018
Thank you for the patience! The Committee has managed to put together a public forum for all psoriasis patients and family members. Learn to manage the condition better with dietary tips by Malacca Hospital Dietitian Ms Tan Woay Yin and testimonials from patients that controlled their own condition for the past 20 years. There will also be a sharing session from female perspective on her journey with this condition. This talk is FOC for all PAM members!
Location is at 2nd floor, Purple Cane Arts Space Jalan Panggong
Please RSVP by 9th August to allow us to plan better. See you there!
Our Secretary to Association, Sofia Lovi Ramasamy sharing her experience to encourage more psoriasis patients to come forward and join our community. You are not alone, we are here for each other. Together we can create more awareness and drive for change in public perception towards our condition. Here is Sofia’s experience.
“I was diagnosed with psoriasis at the age of 12. Being so young, I didn’t understand what it was. It started with extensive dandruff on my scalp. Then I started getting patches on my face and both my upper and lower limbs. It became worse as I got older. I was like a snake going through the shedding process.”
“At one point the lesions covered 70% of my body. Because my immune system was so weak, I started losing my hair. I lost about 10 kgs. I lost mobility. That’s when the arthritis started. It started with my toes. Then my neck started to fuse. My fingers and shoulders were affected as well.”
“In 2014, I was bed ridden for a year. I couldn’t move. I couldn’t feed or bathe myself. I had to rely a lot on my family and it made me feel like I was a burden to them. I couldn’t even contribute to society or to myself. I didn’t see the point of living. That was a really difficult time for me. There were a lot of demons in my head. I had a lot of suicidal thoughts.”
“What pulled me out of the darkness is talking to other patients in the hospital. I spoke to a lot of people. Some of them had terminal illness and only had a few more months to live. I tried to understand what they were going through. It made me feel like my situation wasn’t that bad. It gave me the strength to get well. It gave me a better understanding of my purpose in life.”
“I always involve myself in community building and other social activities. Being able to contribute and be of service is the centre of my life. I want to help create awareness about psoriasis so the public will be less ignorant about the condition. I want to be the voice for other patients who are basically voiceless.”
This article first appeared in True Complexion.