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.

Did you know.....

Psoriasis makes you special. Really. Most people you know often gripe about things that mean little or nothing. They often talk about how busy life is and all the things going on in their life. They complain about their job, income or the weather and tons of other crap we wish was our only problem.

We on the other hand have our immune system making war with our body's single largest organ, our skin. Yet we take this on every minute of every day, all while dealing with lifes comings and goings and largely without complaint.

So while I am not making light of our suffering I am declaring you are a very strong individual, most people could not handle it but you do and in my opinion that dosen't just make you special, it makes you Awesome.

What is most important to us?

As psoriasis patients we all have priorities but what is really most important to us?

Is it...

Awareness and understanding from the public.

An effective support group/network.

Access to all treatments.

A dermotologist who treats you, as well as the disease.

Ability to not just have our voice heard but listened to on all of these issues.

So if it were up to you (which I insist it is) where would you put your energy and support to help make your priority a reality?

Dermatologists - What role do they really play?

Now for what could be seen as a provocative post.

Most of us hold our health care providers in a regard that is often unquestioned. In my case I've only ever been treated by one dermatologist who, if you've visited my website, needs no further introduction. But it is his level of care and willingness to help me explore all treatment options that, as I have later learned, sets him apart.

Though it was my own ignorance I thought every psoriasis patient had the same access to information and treatment options I have. It wasn't until I was invited to be among other patients across Canada that I realized I am the most fortunate psoriasis patient in the country.

While I was glad for me, I was dismayed by the stories I heard from other patients and of their dermatologists attituide toward them and their disease. I was stunned to learn that there are literally dozens who won't even take the time to discuss treatment options that have been approved for use.

I have no nice way of saying it, that just pisses me off. While it may well be their medical pratice, it is our LIFE. How dare anyone, doctor or otherwise, dictate what level of suffering is acceptable, or limit the options available to them among approved treatments. It is the patients final decision. I have said before, I can accept if a doctor is uncomfortable with a particular treatment and will not perscribe it, but they have a responsibility to inform patients of all their options and then refer that person if they wish to use a treatment that doctor is not willing to prescribe.

It is beyond contempt that any heath care provider, being aware of approved treatment options, to not even discuss them or raise the awareness so that a patient can make an informed decision. I doubt those same individuals would find that same attituide acceptable if the roles were reversed.

So what role do dermatologists play? The good ones show the way, the others stand in the way.

There are lots of excellent dermatologists, make sure you get one of them and settle for nothing less.

All New - Advocates

We have added an advocates page to our website and are very excited about it. Each advocate will have a bio in their own words and in some cases a few words about their derm and other important people in their lives who help/helped them manage and cope with psoriasis.

If you would like to be a Then and Now Advocate, please contact me

psoriasisthenandnow@gmail.com

Visit the new section of our website

http://psoriasisthenandnow.com/advocates.html

What is the answer

Many of us have lived a life of misery with this disease. Thousands upon thousands more still do. We who have been so fortunate to get our disease and its symptoms under control have, I believe, a moral and personal obligation to help everyone else who does not (yet), to the extent that is within our abilities.

It does not matter what you do, every bit counts and has the same value, it means you care. There is noting more genuine and powerful to a person who is suffering than for them to know someone else who has or is walking in their shoes, cares.

We are the answer.