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July 2019
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Summer and psoriasis
It’s summer from coast to coast, and we’re all keen to make the most of what is arguably everyone’s favourite season of all.
 
But, what does summer mean for people who have psoriasis? Is it all popsicles and patios for those suffering with this disease?
 
For some insight on these seasonal ponderings, we reached out to Dr. Peter Green – Dermatologist with the Queen Elizabeth II Health Sciences Centre, and Professor of Dermatology at Dalhousie University in Halifax, Nova Scotia.
 
“It’s hard to make a blanket comment for everyone, but most people do better in the summer,” explains Dr. Green.
 
Overall, warmer weather and sunshine provide some respite for those who suffer with psoriasis. But everyone’s body reacts differently to these external factors.
 
“With psoriasis, you treat the patient, not the disease. With different amounts of plaque and different areas of coverage, everyone is affected uniquely.”
 
“Physical activity in the summer brings more perspiration, and how that affects psoriasis can depend on the particular activity, maybe a person’s occupation, and the location of the psoriasis,” explains Dr. Green. “For example, if someone has psoriasis in the groin or the armpit, the hot, humid environment could certainly aggravate the condition. We know that in some instances, recurring trauma can aggravate and precipitate psoriasis. How much of a role that plays in terms of worsening it, that’s hard to say, but in many cases it’s probably less comfortable with more activity leading to perspiration.”
 
In order to best enjoy summer’s benefits, consider keeping perspiration in check, and get a little sun exposure on your skin. However, the key here is moderation and use of sunscreen.
 
“There is some benefit for ultraviolet (UV) exposure. We treat with ultraviolet radiation in our phototherapy unit, with narrow band ultraviolet light mostly, and that’s considered to be safe,” says Dr. Green. “When a person goes outside and gets some sun, they tend to see some improvement because it’s ultraviolet radiation. We tell patients not to overexpose themselves because of the problems related to that, such as skin cancer – we certainly don’t want people to get burns. Individuals could develop psoriasis in the areas where they are sunburned, because of this trauma effect that can occur.”
 
Everyone should apply sunscreen to exposed skin when spending time outdoors. This should have zero impact on a person’s symptoms when applied directly to prosriasis plaques, and the radiation will still be of benefit.

Dr. Green also emphasized the importance of not relying solely on summer sun exposure to treat psoriasis.

“We want to make sure that patients are able to access the good treatments that are available and aren’t relying only on the sun to treat their disease.


It’s also unpredictable knowing how much ultraviolet exposure you would obtain by going outside – it’s a bit of a guessing game, whereas with psoriasis treatment in a clinical setting, it’s very controlled. Going outside is not always predictable, so we want to make sure people don’t overexpose themselves and get burns.”

Now that we understand a bit more about reasonable summertime sun exposure, what about the reality of wearing clothing that exposes our skin to public view?
 
“That’s a dilemma that lots of patients face,” says Dr. Green. “It’s the embarrassment inherent in having psoriasis, which many individuals still do not understand. They might confuse psoriasis with something infectious, when that is not the case.”
 
“Depending on the individual, probably loose-fitting clothing is a good idea – whatever is most comfortable,” Dr. Green explains. “If they do have some involvement on their lower extremities it may be most comfortable to wear shorts. Cotton-based clothing is a good idea.”
 
“People will change to summer clothing in a way that’s most comfortable for them – they may wear shorts or a t-shirt in their own backyard without other people around.”
 
This stigma around the visible effects of psoriasis is something we at the Canadian Psoriasis Network are striving to correct. In this regard, summer can be a difficult time. However, comfort can be taken in the knowledge that over one million Canadians are affected by the same disease, and that everyone is doing their best to enjoy the season, in their own ways.
 
Food is often involved with summer celebrations, and we wanted to know how certain favourite foods might seasonally affect psoriasis symptoms.
 
“I don’t think individually eating an ice cream cone or a little more barbecue is going to hurt, but I think we have more of an awareness of some of the comorbidities – such as cardiovascular disease or metabolic issues like diabetes – that can accompany psoriasis,” explains Dr. Green. “Within reason, enjoying some typical summer foods isn’t going to cause things to get out of balance.”
 
With all this in mind, let’s get out there and enjoy this fantastic Canadian summer. Take appropriate precautions, and continue to work closely with your medical care team to treat your symptoms and manage this condition in ways that work best for you.
At the Canadian Psoriasis Network,
our volunteers are everything
Shining a light on the physical, emotional and social impacts psoriasis and psoriatic arthritis have on more than one million people across the country is a big job.
 
Fortunately, a dedicated group of individuals are doing their part – standing up for people suffering with psoriatic disease. They are our volunteers. Without their help and support, our organization would not exist.
 
We are very pleased to make space in our newsletter to introduce you to one of these wonderful people.
 
Tammy Waddell first became acquainted with our organization last fall, when her dermatologist, Dr. Doug Keeling, who is also an Assistant Professor at Dalhousie Medicine New Brunswick, invited her to participate in a medical student round table discussion. He asked her to tell her story about living with psoriasis.
 
“I was diagnosed at the age of 10, and I’ve been through it all with this disease,” says Waddell. “When I went to Doug I was 73% covered, and I needed a break. Now I’m managing the disease with the help of a biologic, and I’m less than 1% covered.”

Tammy says volunteering is just in her blood. She runs the local food bank, has been a volunteer firefighter, and as a teenager she volunteered for the Special Olympics.

“I like to help others, and I hope that sharing my experience with psoriasis will help others who might be afraid to be themselves because of it. I tell

Tammy Waddell volunteers for several organizations, including the Canadian Psoriasis Network. She was diagnosed with psoriasis at the age of 10.

people: this disease is outside of your control – you might as well just be you.”

Right now Tammy is helping the CPN develop content for World Psoriasis Day. She’s working with our team to make sure website content is in lay terms, so it’s accessible to everyone.
 
“With respect to psoriasis, a lot of people hide it. They don’t want to talk about it. That was never me,” says Waddell. “When I see someone with tattoos, I think…you’ve got your marks, and I’ve got mine.  If you’ve got questions, just ask me. It’s okay.”
 
There are many different ways you can become involved with CPN including sharing your story, being a content reviewer, and helping with awareness and advocacy activities. To learn more, email info@cpn-rcp.com and let us know that you want more info on volunteering.
It’s a federal election year!
Thank you to everyone who responded to our questionnaire about federal government health care priorities.

The majority of CPN respondents rated spending more tax dollars so that Canadians can have better access to prescription medicine as a high priority for the federal government. This was followed by spending more tax dollars to ensure that funding is available so that seniors can access the care they need in the last number of years of their life when they need it.

These are extremely important needs for our community because we know that some people continue to struggle to find treatment that works for them and, when they do, they may struggle to access them or may fail on treatment after time and need other options. We also know that psoriasis is a chronic disease that puts people at a higher risk of developing other health conditions like metabolic syndrome, cardiovascular issues and depression. Living with a chronic condition requires affordable, accessible and timely treatment and support throughout one's life, especially as people age and health issues can become more complex.

To address federal health care priorities such as these, CPN is working with other patient organizations on a federal election strategy. If you are interested to learn more and to sign up for updates, visit: https://votehealthfirst.ca/ 

You can also see how the general public voted on federal health care priorities.

In addition to these concerns, CPN will also raise awareness about psoriasis during the federal election. Some areas that we have identified as important for the federal government to know include:
  • Canada signed on to Resolution WHA 67.9 by the World Health Organization. The Resolution encourages signatories to engage in advocacy efforts to raise awareness about psoriasis, and fight stigma faced by people with psoriasis, in particular through activities held every World Psoriasis Day.
  • The federal government recognizes mental health as a priority, in part through investing in funding agreements which include mental health with provinces and territories. The association between chronic conditions like psoriasis and mental health are significant. Creating awareness and ensuring people with psoriasis and psoriatic arthritis have easy access to treatment and supports will help people to maintain good physical and mental health throughout their lives. It will also help to avoid other costs to their personal, social and work lives and related societal costs.
If you have any other ideas for what federal candidates should know about psoriasis and psoriatic arthritis please share by clicking here.
National Pharmacare – Update
In our last e-newsletter, we provided background on the interim report of the Advisory Council on the Implementation of National Pharmacare (the Council) about how to create affordable national pharmacare for Canadians and their families, employers and governments.

Since then, the Council has completed its final report. Its main recommendations include:
  • A universal, single-payer pharmacare model.
  • Phasing-in Pharmacare, beginning in 2022, with coverage of essential medicines and aggressively expanding the list of medicines each year until 2027 to create a comprehensive formulary (list of covered drugs).
  • Pharmacare would have an annual cost of approximately $7.6 billion in 2022, growing to $38.5 billion in 2027. The federal government would pay for the gradual costs, which would be approximately $15.3 billion annually in 2027.
The federal government accepted the report but did not commit to applying any of the recommendations.

CPN strongly supports efforts to ensure that every person in Canada has access to the medications they need. We further support a strategy that ensures people on public or private plans have access to a range of treatment choices for psoriasis and psoriatic arthritis since response to medications varies and can change over time.

We look forward to keeping our members updated on what federal party platforms say on this issue.
 Looking Ahead
National Psoriatic Arthritis Day is coming up on October 19

Connect with us on Twitter @PsoriasisCanada  and Facebook @Cdnpsoriasisnetwork and stay tuned for member updates!

If you are interested in telling your story about PsA through a social media campaign, please contact executivedirector@cpn-rcp.com.

* * *
 
World Psoriasis Day is October 29

CPN is excited to be releasing new tools and resources based on what we heard as priorities in our member survey last year. We will be launching a new section on our website on October 29th and look forward to sharing this with you as part of our recognition of World Psoriasis Day!

We will also be hosting a webinar focused on living with mild-to-moderate psoriasis. Dr. Irina Turchin will provide an overview of psoriasis causes, severity and treatment options, with a focus on living with mild-to-moderate symptoms.

Please register here: https://register.gotowebinar.com/register/96112009969952259

Please share any questions about living with mild-to-moderate symptoms in advance of the webinar here: info@cpn-rcp.com
 
We will address common questions we hear and will do our best to answer all questions we receive.
From the community
New resources to engage patients and the public in clinical trials

Clinical trials help to shape the future of medicine. We believe it is important for patients and the public to be aware of and engaged with clinical trials. Clinical Trials Ontario, a leading not-for-profit in the clinical trials community, has collaborated with patients, patient groups, health charities and others to launch new online tools to do just that. Check out the Clinical Trial Finder and access plain-language material about clinical trials on the Clinical Trials Ontario website.

* * *

The Canadian Skin Patient Alliance (https://www.canadianskin.ca/en/) is looking to hear from people in Canada who have taken/are taking a biologic for psoriasis, psoriatic arthritis, atopic dermatitis, and/or chronic idiopathic urticaria. Participants have a chance to win a $50 gift card to a retailer of their choice. Check it out here: http://ow.ly/ANqT50v9nXT

* * *

Study on pregnancy

Researchers at the University of Toronto are seeking participants for a study on the experiences and needs of women, trans, and non-binary people with disabilities when they're pregnant and having a baby. Learn more: https://www.canadianpsoriasisnetwork.com/pregnancy/ 

This is an informational post only. CPN is not involved in the study.


 
If you would like to share your story about living with psoriasis or
psoriatic arthritis, let's chat!

Send us a message at:


executivedirector@cpn-rcp.com
 Cdnpsoriasisnetwork
 PsoriasisCanada
What's Happening in the World of Psoriasis?
Each month we'll share a list of psoriasis-related links we think are interesting. Have you read anything you think we should share with the Network? Share your links with us on Facebook, Twitter, or via email.

July Links: *These are links to external news sites, for your interest. The Canadian Psoriasis Network does not necessarily support all views expressed in these external resources.
Copyright © 2019 Canadian Psoriasis Network. All rights reserved.

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