How Does Anyone Do It

Having Psoriasis is difficult

Having Psoriasis and trying to live a healthy and productive life with work and family is a challenge only those who have it understand.

Weaving between disease management, despair, hope, the fear of hope as well as the social and psychological struggles and strains then top it off with  the deep seated knowledge that no one really understands (other than people with psoriasis) and its a wonder any of us get out of bed.

But we do

We have to

If for no other reason than to encourage someone else who suffers just like we do and in doing so making their load a little lighter.

So its been a while......

I realize it has been quite a while since I've posted anything however I've come to learn there are times when even advocates get run down. I have discovered the that resolve required to live with psoriasis is required in being a psoriasis patient advocate and fortunately for me I have that.

What may shock some people, especially other psoriasis patients is some of the flack I've gotten for speaking up. Now don't get me wrong, there is a tremendous amount of genuine support from industry, the medical community and patient groups but some within those areas have been somewhat hostile which is really too bad for them because I am not going to stop.

One of the challanges I have encountered is trying to find other psoriasis patients, it would seem we are very adept at keeping a low profile. So I thought even though this group is small I'm sure I can ask, how can I reach out and find more of us? Your Thoughts?

What Scares You Most About Psoriasis Treatment

Over the years I've heard tons of other psoriasis patients talk about their fears with some psoriasis treatments. What I find most interesting is this fear is often based on mis information or complete lack of information. I always get the "What about the side effects?"

Well lets look at the facts. If you have psoriasis to the point where you cannot live a normal functioning lifestyle you are already experincing a ton of side effects of the phyical, mental and emotional type. Lots of us who have suffered for years make this our normal and say either "its not that bad" or "it could be worse" and while true, this is a defence mechinism, not a well though out reason to decline available treatment.

What is also interesting is people take a virtual mountain of prescription drugs for diseases like diabetes, blood pressure, respiratory, heart, arthritis and everything else without batting an eyelash. Why such an inequity? Is it because these diseases are seen or understood to be more severe? If your disease limits your quality of life I cannot understand why anyone would not want it safely treated.

In the end it is your life and your disease but I will say this let actual experience be your guide, talk to people who are being treated with whatever it is you are considering or want more information on there is no better source. I hope you too can be P free.

Encouragement - Something to Talk About

Encouragement goes a long way when helping other endure suffering or deal with any of lifes lousy situations. Sometimes the gesture of a friend or even a complete stranger can change your outlook or break the downward spirial of despair and defeat.

We inflict such hardships on ourselves, life is hard enough, especially when living with psoriasis. Even speaking out in desperation is good for you can rest assured many people do care and will often respond with more than just words, they will respond with genuine caring, compassion spoken from experience.

Getting Involved in Support Groups

Being realtively new to advocacy and support groups I've wondered what it takes to encourage other psoriasis patients to become a part. I have been all over the net and while there are millions of people who suffer from psoriasis they also seemingly suffer from chronic lack of participation.

I don't mean the proactive kind of activity, even if it is just registering and following what is going on, get the lastest patient perspective on treatments, encouragement etc. How do we reach other patients and bring them into the fold where they can be encouraged, understood and helped?

Newly Diagnosed - So what's next?

Many of us can recall in some detail about the time we were first diagnosed with psoriasis. Arguably unless you knew someone with the disease you had no idea the sentence that has just been handed to you.


We often speak about the role of dermatologists but I think in a way family physicians have a responsibility to provide detailed information early in the process. I think it is important to know not just the physical symptoms that may/will occur but the emotional and psychological burden that befalls most psoriasis patients. It would reason that this would help patients prepare themselves for the long journey ahead and if combined with encouraging them to be proactive in the treatment of their disease it will likely still be difficult but more manageable.


It continues to astound me that there is so precious little information on the front lines about psoriasis, which is sad when you consider how long many have to wait before seeing a dermatologist. As experienced psoriasis patients, is there a role we can play to fill this vacuum?

Thank You! - Yes I am talking to you :)

I wanted to share my thanks to everyone who has either visited, become a part or passed the word about our Psoriasis Then and Now Awareness Campaign. We are at the 5 week stage and here is what we have achieved.

We have had:

911 unique visitors from 33 countries.

Average visit time of 2 minutes 59 seconds.

60 Members in our Then and Now Facebook Group

We have added:

Then and Now Advocate section

Awareness Blog

What we need most:

More psoriasis patients. If you are a part of any psoriasis group please invite the members to come and add their opinions and voice in support. If we as psoriasis patients do not publicly speak up and share with each other what is important to us, who will? And more importantly how will things ever change? Together we can make an amazing difference.