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.

Our Message - Are they getting it?

As psoriasis patients we are often asked our opinion on a range of issues concerning our disease. From things such as what it is like living with a chronic disease and its impact on our lives to treatment options and support.

Some of us have taken part in focus groups or patient advisory boards in the hope our voice and experience will not just be heard but actually listened to. In other words take what we say and apply it.


My question is this.

How would you react/relate to a spokesperson advising you on issues about your psoriasis who do not have the disease themselves, no medical background nor any first hand connection to its struggles, treatments and effect on everyday life?

I confess I am out to prove a point and the only way I can prove it is with your help. Please post a reply.

Biologics - Treating moderate to severe plaque psoriasis

While biologics are relatively new as a treatment for psoriasis they are, init of themselves, far from new in disease treatment. I have personally been a clinical trial patient on 3 of these and the most recent one (which is now approved and being very successfully used) have enjoyed the past 5+ years symptom free and side effect free too for that matter.

In the past year I've had a number of other psoriasis patients ask me if I was worried about what I was using or as they say it, putting in my body. My response often catches them off guard because I smile gentley and with a little laugh ask "are you serious?"

While I know they are, it's ment to bring the temprature down to a level where a good disussion can be had.

First thing I am asked is "what about side effects?" so I say "I've not experienced any, nor can I directly associate any adverse effect related to my treatment." Then I ask them, "Do you have any side effects with your current treatments?" When they say "no" I ask "are your symptoms under control" they say "not really" then I say "ah, those are side effects, so is the itch, scale, bleeding, depression, frustration and so on." Then I ask "have you ever read the side effect warning on a bottle of  pain killers or cough medicine?" most often they say "no" and I simply say "If you did you might not take it anymore."

99.9% of the time, the rest of the conversation is all about how to get access to biologics. There is no substutite for patient to patient experience and voice. Talking to patients and helping them understand and get perspective it a true joy and honour for me.

If you are using other treatments and they are working for you, thats great and I am very happy for you. I believe most psoriasis patients are tired of trying to treat the symptoms and often give up because it is so hard and most available topical treatments rarely work on moderate to severe cases. I equally believe the best option is to prevent the symptoms from occuring and get back to living a normal healthy life.