May I suggest a Support Group?

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May I suggest a Support Group?

Post by Jy on Sun Jan 18, 2009 3:53 pm

hai all...

I'm a good friend to someone who has P.

I came across this site while looking for some information that could help her. But, it aren't easy at all since lots of it explain in Medical term.

I am just wondering if you all organise a get together to discuss and to give encouragement to each another?

If not, may I suggest that probably someone can start a get to together meant like a support group to help those who are newly infected to understand more about P. And also to give encouragement and moral support and also, to discuss possible treatment.

Why so? Because like I mention...I am worried about my this friend, S. She is depressed with P. She have it for almost 5-8 years now. She has no friends among us or anyone we knows that have P. So, she has this thing about being an alien out of all of us. We are worried about her. But, advice coming from us wont help because she would just say we don't understand. All we want her to know, is that it's not end of the world. But....Sigh!! I guess you would understand.

She no longer seeing her Dema coz, its not helping. And, she smokes...she is stressful....and she is not looking after her diet. Which I read online, these are the main few things that could help if taken care of. But, again...coming from us, those without P..she wont listen.

She is so down and possibly suicidal at times, I think. She have no confident and she thinks no guys would ever look at her because of her skin. I'm so sad seeing her so depressed and when she talk about it, she would look like she is going to cry.

I just want to help her.

That's why I hope you all probably can organise a get together no matter which state are you in, not only to help my friend but, people alike.

They need encouragement...Knowing that they are not alone. There is possible cure and ways to reduce P. And, sharing possible knowledge about P.

Or probably getting a support buddy who are willing to help/encourage S.
Sigh!!!!

----

My 2 cents!

Jy

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Re: May I suggest a Support Group?

Post by Dom on Tue Jan 20, 2009 1:55 pm

Hi JY,

Thanks for your post. My name is Dom and I'm the admin person here. You must be a truly caring person (to your close friend who is a "P" patient) that you have come over to the forum and posted. I will try to answer your enquiry with the focus of helping your friend:

(i) Cure For Psoriasis

In my hearts of hearts, I believe there will one day be a cure for Psoriasis. However, that one day is not yet upon us. However, humanity is working towards this (particularly in the West. There is little data about scientist and researchers from the east moving towards this from what I know) My understanding of where we stand with regards to "alleviating the pain of psoriasis" includes the following:

(a) Cure = The permanent fix i.e. psoriasis is eliminated from the patient and does not reoccur. Does not exist yet in 2009. But do not give up hope. Advances in gene therapy and medication for the immune system is fast advancing.

(b) Remission = Psoriasis is "turned off" in the patient for a period of time e.g. weeks, months or years. This is a reality for some patients.

(c) Symptoms Management = This is the area where most P patients are most involved in. There are conventional and alternative means to ensure that the PASI levels (Psoriasis Area Severity Index) of a patient is brought down to the lowest possible levels. Basically the higher your PASI score, the more surface area of your skin is affected by P. (Correct me if I'm wrong anyone) My personal view is that the lower the PASI level, the less depressed the P person will be.


Please tell your friend that she is not alone and that many Malaysians & people around the world must first work towards (c). Then perhaps we can look at (b). Does she have internet access and perhaps you can ask her to come over to this forum? (and if you want me to erase this thread before some comes over - let me know)

(ii) Support Group

There exists a physical meet up support group which is the Psoriasis Association Of Malaysia. This group meets about 1-2 times or more in a year. This group is manned by volunteers. The meeting is usually in KL and PJ. Where are you guys based? You may contact Eugene Cross the president on 03-8948 4335.

Please note however that improvements in Psoriasis medicine is very slow. Hence the meetings are held mainly to talk about (c) and also for members to meet to build camaraderie and support

There is a meeting coming up soon. I believe the details will be out soon. Again, please contact Eugene.

(iii) Feeling Suicidal or Depressed

Should you (in your hearts of hearts) feel that your friend is suicidal, do not ignore this. It could happen in the next second, hour, day, week or months. As I am not an expert in this area, I would suggest that you get in contact with the Befrienders immediately i.e. you can call and ask them what to do. Please keep us posted.

Here is some information: http://www.befrienders.org/support/index.asp?PageURL=suicidal_feelings.php

Their telephone hotline for all states are listed here:
http://www.befrienders.org.my/

Please keep us posted and we'll see how we can help.
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Re: May I suggest a Support Group?

Post by kalish88 on Tue Sep 14, 2010 2:08 pm

karin please no reason to apolgize your worried about your beloved pet. Your doing the right thing by researching what you can off the net. Many come in her lazy or have no interest in searching for themselve. When my dog was sick or just under the weather I always looked up things even there medication. So good for you that your being proactive. I like your investigation skills :-).
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