Selamat Datang. Introduction & Objectives

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Selamat Datang. Introduction & Objectives

Post by Dom on Wed Feb 07, 2007 9:42 am

Hi. My name is Dom. You may have been invited or stumbled upon this forum. For starters, let's use this topic to say hi.

I would like to use this topic to introduce objectives and goals for the Psoriasis Malaysia internet forum and seek your interest to help get it started.
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Objective.

Post by Dom on Wed Feb 07, 2007 9:44 am

The objective envisioned for this forum is that Psoriasis patients within Malaysia will have a place "on the internet" to discuss psoriasis issuess that are related to "living with psoriasis in Malaysia".

E.g What are the psoriasis treatment options available in Malaysia, psoriasis diets and how they relate to Malaysian food, etc

Note: This forum can also act as a supplement to great forums such as The Psoriasis.Org Forum (USA) & UK Psoriasis Help Forum - but with Malaysian topics and context.

Personally, I am also a member of the Psoriasis Association of Selangor & Federal Territory who organises physical meetups. This internet forum does not seek to set itself up as another society/association. The role of the internet forum is to provide a meeting place in "cyberspace" as another option to the physical meetup.

In the future, the option for this internet forum could be one of "association" or "directly belonging" to the Psoriasis Association of Selangor & Federal Territory.

Personally, my proposal is that we get the internet forum "set up" & build it to a "Beta/Prototype" stage that is "up & running" - including getting as much "key learning" to manage and sustain it before reaching the decision point of how it will be "officially positioned" as proposed above.

To get this forum started, I propose the following goals (as a guide):

(a) To establish 1 Admin, 2 moderators or 2 Admin, 3 moderators

Note: The odd number of 3 or 5 starting members will allow us to vote.

(b) To establish the following items (as a guide):

:: Establishing Categories

:: Site rules - Example: No profannities, no sales people in specific threads, etc

:: Terms and conditions, disclaimers, etc

:: Issue of Defamation - doctors, people, real names of people

:: Depression & suicide cases (unlikely but possible) - how do the admin and moderators handle this

:: Procedure of Banning of members if need be (worst case scenario) e.g 1st warning, 2nd warning, etc

:: Role of admin, moderators

:: Positioning: Association/affiliation with Psoriasis Association KL or "directly under" Psoriasis Association

example:
-Implications of association: forum members do not need to sign up as Psoriasis Association member

-Implications of directly under: Allow forum members automatically to become members of Psoriasis Association?

What you can do: As a psoriasis patient who has reached this forum at this startup stage, your options include:

(a) To volunteer to be a starting admin/moderator (or at least temporarily committed until further notice) Note: We are all new to this so I would like propose we take it slow and learn/help one another
(b) Just be a normal member - In which you can sign up as a forum member and be notified when the forum officially kicks off it's maiden topics

Please feel free to reply via this topic and we can get feedback and opinions about the proposal for the creation of the Psoriasis Malaysia internet forum.

There is no absolute right or wrong opinions or methods in getting this forum started. Smile
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Hi

Post by insanity on Tue Jun 19, 2007 10:23 pm

I got your invitation through the comment you left at my blog Insanity-Streak.
Maybe you should try promoting this forum in other medical sites like MalaysianMedicalResources Forum or even TheStar Citizen Blog.
I am 30, female, working in a high stressed IT environment. I had scalp psoriasis about 2 years ago. It was a nightmare for me, and I'm glad that I have recovered, and so far it has not relapsed. Till today, I don't know how or why it happened. I am a thyroid patient and it could be due to the medications I took, or due to my disability to cope with stress.
Anyway, whatever the cause is, I have learnt to lead a slightly more healthier lifestyle than before and appreciate the health I am having now.
I hope this forum will be able to expand and help existing psoriasis patients, or at least give them some support and let them know that they are not alone in this.

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Hello There.

Post by Dom on Mon Jul 02, 2007 12:13 pm

Hi Insanity,

Thanks very much for dropping by. It is great to hear that your scalp psoriasis is in remission. Very Happy

Did you every have any other psoriasis affected areas?

I am a member of the Psoriasis Association of Malaysia (I reckon this is the new name). We have invited a couple of members to come on over and check out this forum. I am also looking for 2 moderators to join me as admin.

Anyway, do drop by ocassionally and hope you are psoriasis free cheers
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Re: Selamat Datang. Introduction & Objectives

Post by EcSTaTiC on Sun Apr 13, 2008 9:26 pm

Hi all, I'm new here from Kuching, Sarawak. First of all I would like to apologize to Dom for my super mega late reply. I received your invitation to this forum on 2/12/07 at www.psoriasis.org but I've only read it today. Basically I totally forgot about my account there lolz.

I've had psoriasis since I was 16 (I'm turning 20 this year) and those were my worst days ever. Although I still have it now but I don't really bother about it now. Ignorance is bliss afterall =D (the more you think about it, the worse it gets).

Well, hope to hear from you guys soon (don't know whether this forum is still active or not).

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Re: Selamat Datang. Introduction & Objectives

Post by Dom on Mon Apr 14, 2008 6:56 pm

Hi Ecstatic,

Great to see and hear you on this forum. I'm also glad to see that my tactic has worked ie leaving a message for you at Psoriasis.Org cheers
I hope you will find this forum as helpful for you as the other great Psoriasis forums out there.

To your question - we are still active although there are not many reqistered users here.

The reasons why we don't have more members:

(a) Awareness: I haven't spent enough time asking for links to this site. So far we have links from medicine.com.my, psoriasis.org and facebook psoriasis group. So if you can help us find more links, that would be great. I emailed to Persatuan Dermatologi twice but no reply. I'll try to speak to the doctor that comes to the Psoriasis Association meetings to help me see if I can get a link from Persatuan Dermatologi.

(b) Internet savvyness : I introduced the forum to the Psoriasis Association but most of the members are not very internet savvy.

(a) + (b) can be overcome in time. So let me know if you can help with (a)? Appreciate it. Very Happy

Btw, thanks for sharing with us on your Psoriasis onset. I can just imagine how tough it must have been for you to have P at such a young age.

I hope you are close to clear now? Are you currently in further studies or working?

I also hope you have mastered the art of long sleeves, etc Smile

Btw, you can also have the forum email alert you of any new posts so that you can keep an eye on correspondence. You probably know this already.
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Re: Selamat Datang. Introduction & Objectives

Post by EcSTaTiC on Fri Apr 25, 2008 11:51 am

Problem with (a)
Well, you guys are the only Malaysians with P that I know.

I'm still very much 70%-75% covered though but it doesn't bother me that much. I'm kind of used to it.

I'm still studying (waiting for my reply for local uni entrance but most probably no hope). Will be pursuing my engineering degree hopefully things will turn out well =D

Art of long sleeves, I never wore one of those before because somehow my psoriasis lesions can't be seen when I wear normal T-shirts and 3/4 long pants. There are still some of my friends who don't know I have psoriasis cause they never noticed.

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Re: Selamat Datang. Introduction & Objectives

Post by qse150 on Fri Jun 20, 2008 9:42 am

yo ...another malaysian with 10 years of p here. been cleared a few times and p always are more than happy to visit me again and again.

Scalp P, PA, Nail P, and even sometimes my ears got P too.

The battles been long and hard but u aint seeing me giving up Very Happy

And yeah, i miss my short pants since then. Long sleeves and jeans for me all the time. Plus i miss the swimming pool A LOT.

Btw, guys, why u all aint receiveing any treatment from the General Hospital?! MUCH Cheaper and the aquoes cream they gave is huge in amount.

Oh, i'm from sibu sarawak here. Use to get treatment at KL GH when i was studying in KL.

Pressure is another element causing psoriasis i think.

And yeah, its kinda sad here. The forum not active enough. Come on guys. let it out. Talk. I'm trying to talk too. Its been a lonely battle since i got P when i was 15. i am 27 this year.

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Re: Selamat Datang. Introduction & Objectives

Post by EcSTaTiC on Sat Jun 21, 2008 3:43 am

My dad's company pays for my medical so what for I go GH ? hahaha I hate going GH man, the service f*cking s*cks but I still need to go there for my photo therapy though. There was once when the machine broke down and the nurse said she'll call me when its fixed and after half a year, I called in to ask about the machine but somehow the nurse on the phone scolded me and said I don't have to call because they will call me. Then I waited for another few months and still didn't receive any calls.


Last edited by EcSTaTiC on Wed Jun 25, 2008 10:04 pm; edited 1 time in total

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Re: Selamat Datang. Introduction & Objectives

Post by qse150 on Mon Jun 23, 2008 9:41 am

lucky fella. But for me ...the KL GH services is doing fine. The only drawbacks are the long queues. The cream they provided are huge in amount. So i am quite happy about it.

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Re: Selamat Datang. Introduction & Objectives

Post by Dom on Mon Jun 23, 2008 3:15 pm

Hi Qse 150,

Thanks for making your way here. Please feel free to post any discussions on P here and although this forum does not have many people, a big oak tree started with a seed.

Please spread the word to people that have P, that you may know.

Feel free to visit the other threads on the different topics and once again, glad to have you on board Very Happy


Note: To all fellow users - No worries expressing your self with "flowery language" but I would like to ask that you use some self censorship like sh** by replacing the alphabets with ***. As this is a public forum, we will have different people with different levels of acceptance for using expressive words. Hope we can get your cooperation. Very Happy
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Re: Selamat Datang. Introduction & Objectives

Post by qse150 on Mon Jun 23, 2008 3:39 pm

yeah ..i was very excited when i found out in there's a malaysian forum. but aww man there's so little activity and information here. I joined another one in the UK group. That one really contains lots of veteran P people.

Long live long sleeve and long pants ..mwahahahah

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Re: Selamat Datang. Introduction & Objectives

Post by Dom on Wed Jun 25, 2008 1:52 pm

Hi Qse 150,

Thanks for sharing. This forum is specifically for Malaysians to have discussions about P with other fellow Malaysians.

For example, it is easier to discuss what medicine we have in Malaysia and who is trying what drugs. For instance, you will see that many of the forums speak about biologics which we don't have access to. Very Happy

I hope you will use this forum to supplement your online research and peer support. Have a great week ahead.
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Re: Selamat Datang. Introduction & Objectives

Post by EcSTaTiC on Wed Jun 25, 2008 10:05 pm

Oops my bad...censored off the vulgarities.

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Re: Selamat Datang. Introduction & Objectives

Post by mattcorp on Sat Sep 20, 2008 12:46 am

yup, gud 2 kno we're not alone. Very encouraging guyz & galz.

I tot I was God forsaken having this P, but looks like I'm lucky not to hv extensive... down to 1 spot on scalp & rest on PA.

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Re: Selamat Datang. Introduction & Objectives

Post by alvinwong on Thu Nov 13, 2008 5:18 pm

Hi Dominic

Perhaps, i may be of help to you as administrator or moderator for your forum.

Let's discuss

call me at 012-3701961 or email me at:
just4anything@gmail.com
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