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.
Friday, July 22, 2011
Wednesday, May 18, 2011
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.
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.
Thursday, May 12, 2011
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?
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?
Monday, May 9, 2011
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?
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?
Friday, May 6, 2011
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.
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.
Wednesday, May 4, 2011
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.
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.
Tuesday, May 3, 2011
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.
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.
Saturday, April 30, 2011
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.
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.
Friday, April 29, 2011
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?
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?
Wednesday, April 27, 2011
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.
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.
Tuesday, April 26, 2011
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
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
Monday, April 25, 2011
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.
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.
Friday, April 22, 2011
Just a Thought
Something short today.
Having psoriasis was not a decision you made, life made that for you.
How you manage your psoriasis it is your decision and will decide your quality of life.
No matter what it takes, you're worth it!
Having psoriasis was not a decision you made, life made that for you.
How you manage your psoriasis it is your decision and will decide your quality of life.
No matter what it takes, you're worth it!
Thursday, April 21, 2011
I have psoriasis
The number of people who can say that is amazing. The number that do is not.
Over the years we as individuals have watched in awe how different groups and causes have rallied their particular group with great success. What makes us any different? Nothing.
Together with a united voice we can increase awareness, drastically increase access to medication, provide vital support to one another and put and end to suffering which we all understand too well.
Please join me, add your voice to mine, this is not my campaign, it's ours. Together we can change the world for people who suffer from psoriasis. Isn't that worth our best effort? I believe it is!
Over the years we as individuals have watched in awe how different groups and causes have rallied their particular group with great success. What makes us any different? Nothing.
Together with a united voice we can increase awareness, drastically increase access to medication, provide vital support to one another and put and end to suffering which we all understand too well.
Please join me, add your voice to mine, this is not my campaign, it's ours. Together we can change the world for people who suffer from psoriasis. Isn't that worth our best effort? I believe it is!
Wednesday, April 20, 2011
Psoriasis Care and Control - It's up to you!
Next month (May) will be my 23rd year with psoriasis and while I do not have a celebration planned I do have quite a bit to reflect upon.
Most of that time I felt as though I was the victim, like I was being punished for something I did not do and there was no escape, I shutter to recall those thoughts. Days turned to weeks, months, years and so on.
It is only in retrospect I am able to see things more clearly. I don't know why I expected it but I figured one day to either wake up and the scaly patches would be gone or I would hear news that a cure or control had been found.
Psoriasis beats you down and will keep you down if you let it. Yet it wasn't until I stopped being the victim that I actually started making progress against my disease. I adopted an "if not me than who" attituide, meaning if I am not going to make a difference in my own life, who is going to.
Lets face it, no one is going to show up at your door and announce the liberation from psoriasis you hope for, quite the oppsite, you have to go get it.
Allow me to point in the right direction. Not all dermatologists specialize in the treatment of psoriasis, this was a real eye opener for me. I am the most fortunate psoriasis patient on the planet, my derm is amazing but I have met dozens of patients who's dermatologist won't even discuss advanced treatment options. If you had a loved one with cancer, would you accept that level of care and treatment from an oncologist?
Its not just psoriasis, its an aweful disease that does terrible things to you, never allow it to become your normal, you deserve better, you dam well deserve better! So no matter what you tried yesterday if it did not work, try something different. I don't care if you go out and get a new moisturizer, different prescription, change dermatologists, write a letter to your government or join a support group, do something and keep doing it and one day you will wake up with your symptoms under control. And that my friends is worth everything it takes you to get there.
Psoriasis care and control is up to you!
Most of that time I felt as though I was the victim, like I was being punished for something I did not do and there was no escape, I shutter to recall those thoughts. Days turned to weeks, months, years and so on.
It is only in retrospect I am able to see things more clearly. I don't know why I expected it but I figured one day to either wake up and the scaly patches would be gone or I would hear news that a cure or control had been found.
Psoriasis beats you down and will keep you down if you let it. Yet it wasn't until I stopped being the victim that I actually started making progress against my disease. I adopted an "if not me than who" attituide, meaning if I am not going to make a difference in my own life, who is going to.
Lets face it, no one is going to show up at your door and announce the liberation from psoriasis you hope for, quite the oppsite, you have to go get it.
Allow me to point in the right direction. Not all dermatologists specialize in the treatment of psoriasis, this was a real eye opener for me. I am the most fortunate psoriasis patient on the planet, my derm is amazing but I have met dozens of patients who's dermatologist won't even discuss advanced treatment options. If you had a loved one with cancer, would you accept that level of care and treatment from an oncologist?
Its not just psoriasis, its an aweful disease that does terrible things to you, never allow it to become your normal, you deserve better, you dam well deserve better! So no matter what you tried yesterday if it did not work, try something different. I don't care if you go out and get a new moisturizer, different prescription, change dermatologists, write a letter to your government or join a support group, do something and keep doing it and one day you will wake up with your symptoms under control. And that my friends is worth everything it takes you to get there.
Psoriasis care and control is up to you!
Tuesday, April 19, 2011
You know you have psoriasis when...
You know you have psoriasis when...
1. The only people who truly understand are usually complete strangers. (other patients)
2. You have one of the largest support networks in the world but probably don't realize it, yet.
3. You have the strength of personality that can bend steel.
4. You have applied so many different substances to your skin every cosmetic company should have you on staff as an advisor.
5. You often care more about others with the disease than you do yourself.
Take heart my friends, today is brighter than yesterday and the outlook for tomorrow is even better.
1. The only people who truly understand are usually complete strangers. (other patients)
2. You have one of the largest support networks in the world but probably don't realize it, yet.
3. You have the strength of personality that can bend steel.
4. You have applied so many different substances to your skin every cosmetic company should have you on staff as an advisor.
5. You often care more about others with the disease than you do yourself.
Take heart my friends, today is brighter than yesterday and the outlook for tomorrow is even better.
Monday, April 18, 2011
Why so public? I am too afraid.
I've been asked "why is your psoriasis awareness campaign so public considering many people with psoriasis are afraid of public scrutiny and judgement."
My answer is "Exactly"
It is sad and I am no better, I hid my disease for years and wouldn't talk about it so I'm not judging anyone who isn't ready, I'll be here to help when you are. However with that said there is an unbelieveable number of us who are ready and willing, just looking for a way and means, I hope to provide that way and means. I guess I'm trying to give leadership and encouragement to a group that are too often overlooked and misunderstood.
Private chat rooms are a great, secure place for people to discuss things that are personal or issues that they are not ready to make public. What they don't do is inform and educate the public and we have been our own worst enemy. We don't need to put it in their face but we can start be talking about it publicly.
Psoriasis is not our fault. Nor is Cancer, Arthritis or Alzheimer's for the people who suffer from those diseases. One thing that is overwhelmingly different is public awareness. Each of those diseases were unheard of for many years until someone said "I am going to make a difference and change that." Then a funny thing happened, it caught on, others joined them and now they have hugely successful orginizations. But even more than that, they have public support and understanding.
It will be no different for us. People with psoriasis and their support networks of friends and family are ready to help, I know it, you know it.
Now you know "Exactly" why I am doing what I am doing.
Andrew
My answer is "Exactly"
It is sad and I am no better, I hid my disease for years and wouldn't talk about it so I'm not judging anyone who isn't ready, I'll be here to help when you are. However with that said there is an unbelieveable number of us who are ready and willing, just looking for a way and means, I hope to provide that way and means. I guess I'm trying to give leadership and encouragement to a group that are too often overlooked and misunderstood.
Private chat rooms are a great, secure place for people to discuss things that are personal or issues that they are not ready to make public. What they don't do is inform and educate the public and we have been our own worst enemy. We don't need to put it in their face but we can start be talking about it publicly.
Psoriasis is not our fault. Nor is Cancer, Arthritis or Alzheimer's for the people who suffer from those diseases. One thing that is overwhelmingly different is public awareness. Each of those diseases were unheard of for many years until someone said "I am going to make a difference and change that." Then a funny thing happened, it caught on, others joined them and now they have hugely successful orginizations. But even more than that, they have public support and understanding.
It will be no different for us. People with psoriasis and their support networks of friends and family are ready to help, I know it, you know it.
Now you know "Exactly" why I am doing what I am doing.
Andrew
Sunday, April 17, 2011
Taking the First Step - Together
Today each of us has an opportunity to change the status quo of psoriasis for ourselves, others and future generations of those who will have it. Taking the first step is the hardest but you are not alone. I hope that together we will be able to look back at the day each of us took control and know we made a difference in our lives and the lives of others who have the disease. I extend to you my had in friendship, understanding and strength to help you make that first step. We are all in this together.
1st Blog Post - The Awareness Campaign Begins
Hello Everyone,
I'm new to blogging, and advocating too but not to psoriasis. Next month is my 23rd year but it is only recently I've decided to take my resolve to do battle with my disease and switch gears to hopefully encourage and empower others who suffer from psoriasis. The key difference in my approach is I intend to be very public about it. I would truly appreciate anyone who believes this is a worthy cause to give whatever support they can (not money, just spread the word).
Trying to raise awareness is brutal but I am taking the same one day at a time as I do with psoriasis. I cannot believe so many have it and it never gets media attention. The way I see it, the more attention I can bring, the more understanding and acceptance we will receive from the public and the stronger we become.
Thank you for your support.
www.PsoriasisThenandNow.com
Andrew
I'm new to blogging, and advocating too but not to psoriasis. Next month is my 23rd year but it is only recently I've decided to take my resolve to do battle with my disease and switch gears to hopefully encourage and empower others who suffer from psoriasis. The key difference in my approach is I intend to be very public about it. I would truly appreciate anyone who believes this is a worthy cause to give whatever support they can (not money, just spread the word).
Trying to raise awareness is brutal but I am taking the same one day at a time as I do with psoriasis. I cannot believe so many have it and it never gets media attention. The way I see it, the more attention I can bring, the more understanding and acceptance we will receive from the public and the stronger we become.
Thank you for your support.
www.PsoriasisThenandNow.com
Andrew
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