Canadian Skin Fall 2021

COMPLIMENTARY

Fall 2021

VOLUME 12 • ISSUE 3

CANADIAN

FROM BABY ACNE TO DIAPER RASH:

Caring for newborn skin Psoriasis and reproductive health

Baring It All www.canadianskin.ca The Official Publication of the Canadian Skin Patient Alliance

CLOSE-UP ON WARTS SKIN PATIENT ENGAGEMENT IN RESEARCH

SKINfacts More diverse colour options for bandages

Caring for your skin in autumn

As dry, cooler air arrives in the fall, skin may lose moisture.

Autumn also provides an opportunity to recover from any summer toll on the skin left by sun, chlorine, and saltwater.

Try these tips: • Moisturize – It’s best to apply moisturizer directly after a bath or shower to help seal in and replenish the skin with the necessary water and oils.

• Protect your lips – Continue to protect against the sun’s UV rays. But also start moisturizing now to prevent dry, cracked lips this winter.

• Invest in hand cream – Hands often become dry and cracked during the winter. Start moisturizing hands now to help ensure soft and healthy hands all winter long.

• Don’t forget the sunscreen – Even though the temperatures feel cooler and the days are shorter, children and adults should continue to apply sunscreen before heading outside.

VOLUME 12 • ISSUE 3

Fall 2021

Fall 2021 • Volume 12 • Issue 3

COMPLIMENTARY

ISSN 1923-0729 Publisher: Craig Kelman & Associates www.kelman.ca FROM BABY ACNE TO DIAPER RASH:

Caring for newborn skin

All rights reserved. ©2021 Contents may not be reproduced.

Psoriasis and reproductive health

Baring It All www.canadianskin.ca The Official Publication of the Canadian Skin Patient Alliance

CLOSE-UP ON WARTS SKIN PATIENT ENGAGEMENT IN RESEARCH

2 | www.canadianskin.ca | Fall 2021

AND TIPS FOR SKIN PATIENTS AND THEIR FAMILIES

Nail facts

Bandages designed to match a spectrum of skin colours have come on the market in recent years to fill a gap in the market for Black and Brown skin. Good wound care promotes skin health, and having bandages that reflect the diversity of the people who use them to cover their cuts and scrapes allows more people to feel reflected in their care.

There are a few businesses that were started specifically to fill this need for bandages that blend in better with a wider range of skin colours. Tru-Colour, which is a Black-owned business, was started in 2014 and aims to provide skin-tone shade bandages for everyone. Browndages is another Black-owned business, and Band-Aid brand also recently unveiled their new OurTone bandages designed to match a spectrum of skin tones.

CANADIAN

SUGGESTIONS

Your fingernails are made of the same stuff as hair – a hard material called keratin.

Here are some other interesting facts about nails: • They grow an average of 3.5 mm on fingers and 1.6 mm per month on toes.

• They grow faster in summer than in winter.

• It takes six months for fingernails and a year for toenails to grow back if you lose one.

• They absorb more water than skin.

• Men’s nails grow faster than women’s nails.

• Nail biting is called onychophagia.

• About 10% of dermatological conditions are nail-related.

Safer choices for Halloween face paint Have no fear – Halloween is almost here!

Did you know that some Halloween face paints labeled as “safe,” “hypoallergenic,” or “non-toxic” can still contain skin-irritating metals such as lead, nickel, cobalt, and chromium?

It’s important to review the list of ingredients. Dermatologists recommend looking for face paints that are tinted with natural pigments from fruits, vegetables, flowers, and other botanicals (for example, organic beets, purple carrots, turmeric, red cabbage, and marigold).

It’s also a good idea to check the brand’s website to make sure that all the company’s ingredients are independently tested for safety and purity.

When looking for the best face paint for sensitive skin, look for these common characteristics: • Hypoallergenic • Suitable for children • Natural • Water-based • Easy-to-remove • Non-toxic Avoid face paints that have an added artificial fragrance, such as a fruity scent, as this can lead to skin irritation. Consider using a head piece or mask instead; you can even make your own natural face paints.

To remove face paint when trick or treating is done, try using organic coconut oil.

Canadian Skin Patient Alliance: 111-223 Colonnade Road South, Ottawa, ON K2E 7K3 Toll Free: 1-877-505-CSPA (2772) • E-mail: info@canadianskin.ca Canadian Publication Mail Sales Product Agreement No 40065546. Printed in Canada.

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To subscribe today to this complimentary magazine, call 1-877-505-2772 or email us at info@canadianskin.ca

ASK THE EXPERT

Learn more, live better.

A Canadian healthcare professional answers your questions.

Questions about itchy skin & dandruff

By Dr. Isabelle Delorme

Q A

How can I exercise comfortably in the heat?

When I sweat it makes the itching worse.

Sweating plays an important role in maintaining a balanced body temperature in humans. However, under certain circumstances, sweat can cause itching.

When excessive sweat accumulates on the skin for a long period, miliaria, or heat rash, can develop and cause itching.

Heat rash develops when blocked pores (sweat ducts) trap sweat under your skin. It usually shows up in skin folds and where clothing causes friction. It usually clears on its own or by cooling the skin.

Another skin condition causing exercise-associated itching is cholinergic urticaria (CU). It is a type of hives that appears when a person is sweating or their core body temperature increases. CU typically presents with a number of small, short-lasting hives but may also involve skin redness, swelling (wheals), and pain which develops usually in response to exercise. Symptoms go away quickly, typically within one hour. The most common treatment for sweat rash is using antihistamines. Most importantly, you want to keep your skin cool to prevent a rash from forming.

Finally, people suffering from inflammatory skin conditions, such as eczema – also known as atopic dermatitis (AD) – suffer from itch when exposed to heat. For people with AD, exercise can dry out the skin through the loss of fluids, and the sodium in sweat can further dehydrate the skin as well as sting and irritate it.

Here are some steps you can take before, during, and after your workout to reduce your chances of itching or flaring.

1. Drink plenty of water before, during, and after exercise.

2. Carefully consider your clothing options. Synthetic fabrics designed to wick moisture away from the skin can also irritate your skin. Stick with light, breathable fabrics (such as cotton) instead. Keep in mind that tight, form-fitting workout clothes will trap sweat.

3. Moisturize before and after exercise. Applying emollients (products that soften and moisturize the skin) will protect your skin before and after exercise. A cream is preferred to an ointment.

4. Cool down during exercise. Use cold compression wraps for cooling the skin and calming the itch in eczema. Keep a towel nearby to wipe off sweat during exercise.

5. When possible, exercise indoors in well-ventilated facilities.

6. Avoid hot showers and hot baths after exercising.

Washing off sweat rather than letting it dry on the skin is a good idea. Start with a warm shower and gradually make it cooler in stages.

Q A

My scalp is really flaky. Is there anything I can do at home to help?

Dandruff is a common scalp condition in which small pieces of dry skin flake off of the scalp. The most effective way to treat and control dandruff is to use over-the-counter dandruff shampoo with one of these ingredients: coal tar, ketoconazole, salicylic acid, selenium sulfide, or zinc pyrithione.

Shampoo daily until your signs and symptoms begin to subside, and then use it one to three times a week as needed.

Be sure to leave your shampoo on for the full recommended time – this allows its ingredients to work.

The following self-care tips may also help you control your dandruff: • Soften and remove scales from your hair. Apply mineral oil or olive oil to your scalp. Leave it in for an hour or so.

Then comb or brush your hair and wash it.

• Avoid styling products, especially ones that contain alcohol. Stop using hair sprays, gels, and other styling products while you’re treating the condition.

For most people, dandruff does not require medical attention.

However, sometimes the flaking and itching that appears like dandruff is actually a medical condition, such as seborrheic dermatitis or psoriasis.

In seborrheic dermatitis of the scalp, there is inflammation and itchiness in addition to dandruff. It can also affect oily areas of the body, such as the face, especially around the nose, in the eyebrows, on the eyelids, or behind the ears.

Psoriasis also causes dandruff and red skin, covered with silvery-white scales. It usually affects other areas of the body, mainly the elbows and knees.

Scalp psoriasis and seborrheic dermatitis of the scalp share some similar treatments, including medicated shampoos and topical corticosteroid or antifungal solutions.

Dr. Isabelle Delorme is a certified dermatologist working in Drummondville, Quebec.

Got a question? Send it to info@canadianskin.ca.

If your question is published you will receive a $25 gift card.

Fall 2021

| www.canadianskin.ca | 3

FROM BABY ACNE TO DIAPER RASH:

Caring for newborn skin

By Megan Lam, Dr. Harry Liu, and Dr. Cathryn Sibbald

N

ewborn skin is thinner, more permeable, and at greater risk for water loss and irritation from environmental agents, including harsh chemicals and allergens.1 Studies report over half to

95% of newborns will have a skin issue or concern. 2–4 However, the majority of skin concerns are temporary and do not progress beyond the neonatal period, meaning they typically resolve without needing treatment. 2

Newborn skin fact: The white waxy substance that coats a baby’s skin when they are born (called vernix) is a combination of old skin cells, sebaceous secretions, and detached lanugo hairs. It is full of nutrients and antimicrobial compounds. It can be rubbed into the baby’s skin after birth to add an extra boost of natural protection from dryness.5

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Common newborn rashes 1. Milia: Present in almost half of newborns, milia are small, pearly-white bumps just under the skin surface that are filled with a protein called keratin. They are often seen on the nose and face but can be rarely seen on the scalp and trunk.

What should I do about it?

It’s important not to squeeze or pop these bumps as this is unnecessary and can lead to complications. Milia should go away on their own within a few weeks.

2. Baby acne: Occurring in approximately 20% of infants, baby acne, also called neonatal acne, usually comes on around the three-week mark but can occur any time before six weeks of age; it looks like small red bumps, usually on the face, and it does not lead to scarring.

However, when the small flesh-colored acne bumps (known as comedones) are absent, many consider the condition as benign cephalic pustulosis, a name given to small red bumps and pus-filled bumps mostly affecting the face. The inflammation in this condition has been connected to a yeast known as Malessezia that is naturally found on the skin and is also involved in seborrheic dermatitis and cradle cap.

What should I do about it?

Baby acne commonly resolves without any treatment. However, a topical antifungal may speed up clearance of benign cephalic pustulosis, sometimes in combination with a small amount of mild steroid (hydrocortisone) for any inflammation. Avoid over-the-counter acne treatments unless recommended by your doctor. Remember, baby acne usually does not scar, and having baby acne does not predict the development of acne later on in life. If there are significant breaks in the skin or if the bumps have an irregular, wonky shape, consider taking the infant to see a doctor to rule out an infection.

The scoop on diaper rash Diaper rash, a type of contact dermatitis, is common – particularly between nine and 12 months of age – and presents as red and tender skin on the buttocks and/or pubic region.

When it is in the groin/the folds, it is sometimes due to a yeast infection.

It is most commonly due to irritation from moisture and other irritants in soiled diapers. Sometimes it may also be accompanied by a fungal infection, and the folds of the groin will be involved. If the rash does not start to improve over several days of home care, includes open sores or blisters, is oozing or bleeding, or if your baby has a fever, it is important to contact your baby’s doctor as these may be signs of a more severe infection or of another skin condition.

5 tips for improving diaper rash 1. Change diapers frequently, even if they are barely wet, to reduce contact time with whatever is irritating the baby’s skin. Super absorbent disposable diapers will decrease the moisture and help recovery.

2. Apply liberal amounts of petroleum jelly or an unscented zinc oxide based cream with each diaper change. It is preferred to only remove the top soiled layer of the diaper cream to avoid unnecessary trauma to skin from removing all of the product with each change.

3. Avoid perfumed or alcohol-containing baby wipes – use either a damp cloth or wipes with water only.

4. Keep diapers loosely fitted.

5. After baths, dry baby’s skin thoroughly by dabbing gently, and avoid vigorous rubbing.

to moisturize is immediately following bath-time, and daily moisturizer use can help to support skin barrier function. Several recent clinical trials have found that the use of moisturizers in the first years of life do not prevent the onset of eczema in babies without a diagnosis of eczema,9–11 although frequent moisturizer application can reduce severity of skin inflammation in children who already have eczema.12 Thick creams or ointments are generally more effective than lotions or oils, and petroleum jelly is commonly recommended as an inexpensive and allergen-free option. Talk to your doctor about what options are best for you and your baby.

Sun safety in newborns Newborn skin is much more prone to sunburns than grown-up skin, and even babies with darker skin still need maximum sun protection. In general, newborns should not be exposed to direct sunlight, particularly during peak sun hours from 11 AM to 3 PM. Physical barriers, such as strollers with a sunshade or umbrella and long-sleeved clothing, are preferred. Sunscreens with zinc oxide or titanium dioxide as active ingredients can be used on small areas of exposed skin, even in babies under six months of age if sun avoidance is not possible, according to the Canadian Dermatology Association.6

Dr. Harry Liu is a dermatology resident at the University of British Columbia.

Updated recommendations for newborn skin care practices Baby’s first bath should ideally occur once baby’s temperature has stabilized; the World Health Organization (WHO) recommends waiting 24 hours after birth for the first bath.7 Wiping with a damp washcloth is adequate for most days, as bathing too often can dry out the skin, leading to increased risk of irritation and infection. The American Academy of Dermatology (AAD) recommends limiting baby’s bathtime to five to ten minutes.8 The use of soap-free and neutral-to-slightly-acidic cleansers are generally preferred.8 Following bathing, babies should be covered and thoroughly patted dry, especially in skin folds. The best time

Megan Lam is a medical student at McMaster University with an interest in dermatology.

Dr. Cathryn Sibbald is a dermatologist at the Hospital for Sick Children and Assistant Professor at the University of Toronto.

REFERENCES

1. Santos SV, Costa R. Treatment of skin lesions in newborn children: Meeting the needs of nursing staff. Rev da Esc Enferm 2014;48:985-992.

2. Reginatto FP, DeVilla D, Muller FM, et al. Prevalence and characterization of neonatal skin disorders in the first 72 h of life. J Pediatr (Rio J) 2017;93:238-245. Available at: http://dx.doi. org/10.1016/j.jped.2016.06.010.

3. Gokdemir G, Erdogan HK, Köşlü A, et al. Cutaneous lesions in Turkish neonates born in a teaching hospital. Indian J Dermatol Venereol Leprol 2009;75:638.

4. Ekiz Ö, Gül Ü, Mollamahmutoglu L, et al. Skin findings in newborns and their relationship with maternal factors: Observational research. Ann Dermatol 2013;25:1-4.

5. Visscher MO, Adam R, Brink S, et al. Newborn infant skin: Physiology, development, and care. Clin Dermatol 2015;33:271-280.

Available at: http://dx.doi.org/10.1016/j.clindermatol.2014.12.003.

6. Anon. Sun safety for every day. CDA. Available at: https:// dermatology.ca/public-patients/sun-protection/sun-safetyevery-day/. Accessed May 31, 2021.

7. WHO. WHO recommendations on newborn health: guidelines approved by the WHO guidelines review committee.; 2017.

8. Blume-Peytavi U, Lavender T, Jenerowicz D, et al.

Recommendations from a European Roundtable Meeting on Best Practice Healthy Infant Skin Care. Pediatr Dermatol 2016;33:311-321.

9. Skjerven HO, Rehbinder EM, Vettukattil R, et al. Skin emollient and early complementary feeding to prevent infant atopic dermatitis (PreventADALL): A factorial, multicentre, cluster-randomised trial.

Lancet 2020;395:951-961.

10. Dissanayake E, Tani Y, Nagai K, et al. Skin Care and Synbiotics for Prevention of Atopic Dermatitis or Food Allergy in Newborn Infants: A 2 × 2 Factorial, Randomized, Non-Treatment Controlled Trial. Int Arch Allergy Immunol 2019;180:202-211.

11. Chalmers JR, Haines RH, Bradshaw LE, et al. Daily emollient during infancy for prevention of eczema: The BEEP randomised controlled trial. Lancet 2020;395:962-972. Available at: http:// dx.doi.org/10.1016/S0140-6736(19)32984-8.

12. Barfield A, Brown H, Pernell P, et al. Effectiveness of emollient therapy in pediatric patients with atopic dermatitis. J Dermatol Nurses Assoc 2017;9:123-128.

Fall 2021

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Close-up on: Warts

BY JESSICA HO AND SABRINA RIBAU

Warts are growths on the skin caused by the human papillomavirus (HPV).

The virus invades skin cells and enters a resting period, called latency, during which the virus multiplies and invades additional cells. Latency may last for months to years, after which there may be the appearance of warts.

Warts are contagious and can spread through direct and indirect contact.

Direct contact: Skin-to-skin contact, including sexual activity.

Indirect contact: From surfaces that have been in contact with an HPV infection (known as fomites).

How do I know what kind of wart I have?

Certain strains may infect specific areas of the skin, and there are six primary types of warts: • Common warts – hands/knees • Filiform warts (warts that have long, narrow strands that Common wart extend from the skin) – nose/mouth/beard area • Flat warts – face/hands/ shins/knees • Plantar warts – sole of foot • Periungual Flat warts on the warts – located skin caused by the around the nail HPV virus • Genital warts Diagnosis If you experience any wart-related signs or symptoms, visit your doctor – they will examine it, and sometimes a biopsy of the wart will be performed.

Individuals with anogenital warts should be screened for other sexually transmitted infections (STIs).

Some strains of HPV that cause genital warts have the potential to cause cancer of the cervix, vulva, penis, and anus. Women should be referred for gynecologic screening like a Pap 6 | www.canadianskin.ca | Fall 2021

smear to make sure they have no signs of cervical cancer, as it is often asymptomatic in early stages. More information about the development of cancer related to HPV infections can be found on our website at: www. canadianskin.ca/skin-conditions-anddiseases#human-papillomavirus-hpv.

Lifestyle changes and skin-care strategies Non-genital warts AVOID • Brushing, shaving, or clipping areas with warts • Biting fingernails if there are warts near them • PIcking at and touching warts INSTEAD • Use a different set of nail clippers or files for nails with warts and healthy nails • Keep hands as dry as possible • Wash hands after touching warts • Cover warts with a bandage to discourage picking

Cantharidin and cantharidin combination products cause skin to blister and peel off.

Imiquimod is a prescription cream that causes your body’s normal immune defences to work against the wart.

Podophyllin and podofilox (podophyllotoxin), used by doctors, cause skin cells, including the wart cells, to die and then peel off.

Salicylic acid is generally used to remove the external thick dead skin to improve the efficacy of topical medical therapies.

Other strong acids (bichloroacetic acid/ trichloroacetic acid) can be used to spot-treat warts.

Other options: Prescriptions, laser therapy, aminolevulinic acid with photodynamic therapy infrared coagulation, duct tape coverage, and surgical removal.

Genital warts RISKS • Having unprotected sex • Having multiple sexual partners PREVENTION • Use a condom during sex, but note that transmission can still occur as condoms may not cover the entire affected area • Disclose to your partner that you have genital warts • Recommend that your sexual partner be checked for warts by a physician

Coping and support Aside from the pain caused by plantar warts, non-genital warts pose no additional risk to otherwise healthy individuals.

However, seeking medical treatment for warts may resolve any discomfort and improve the appearance of the skin. If you are having trouble coping, we encourage seeking additional support through your physician or other mental health supports.

More information on the signs, diagnosis, and treatment of warts can be found at www.canadianskin.ca/skinconditions-and-diseases#warts.

Treatments HPV vaccine will reduce the risk of genital warts that can lead to cancer.

REFERENCE

Liquid nitrogen (cryotherapy) is one of the most common treatments used by physicians for warts. It is used to “freeze off” or “freeze burn” the wart, causing the cells to die and the wart to peel off.

Jessica Ho is a medical student at Queen’s University and holds a Master’s of Science in public health.

Moed L, Shwayder TA, Chang MW. Cantharidin Revisited: A Blistering Defense of an Ancient Medicine. Arch Dermatol. 2001;137(10):13571360. doi:10.1001/archderm.137.10.1357

Sabrina Ribau is the Educational Programs Coordinator for the CSPA.

ith Women+ w

psoriasis, inflammatory arthritis & rheumatic disea se are

Baring It All

in new report about sexual & reproductive health

By Rachael Manion, Antonella Scali, Laurie Proulx, Wendy Gerhart, and Victoria Rozycki

People living with psoriasis, inflammatory arthritis, and rheumatic disease are often diagnosed in the prime of their lives when they need to consider a variety of health-related issues like contraception, sexual health, family planning, and menopause. People who were assigned female at birth and live with these conditions have unique reproductive and sexual health considerations and needs.

However, not a lot is known about the challenges they face as as they consider and navigate their sexual and reproductive health needs. The Canadian Association of Psoriasis Patients (CAPP), Canadian Psoriasis Network (CPN),

Canadian Arthritis Patient Alliance (CAPA), and Canadian Spondylitis Association (CSA) collaborated to produce a report on the experiences and needs of women+ living with psoriasis, inflammatory arthritis, and rheumatic disease, called Baring It All (https:// canadianpsoriasis.ca/en/resources/ reports/baring-it-all). As defined in the report, women+ refers to people who identify as female (also known as assigned female at birth).

The Women’s Sexual and Reproductive Health Survey was co-developed and launched by these four organizations on International

Women’s Day 2021 to build a stronger understanding of patients’ experiences and identify information gaps across different stages of life. Specifically, women+ were asked about their experiences and insights about sexual health, contraception and family planning, parenting, menopause, pain, mental health, and difficulties paying for medications.

Many respondents lived with plaque psoriasis (36%), psoriatic arthritis (38%), ankylosing spondylitis (32%), osteoarthritis (19%), and rheumatoid arthritis (16%), as well as other rheumatic and psoriatic conditions.

Fall 2021

| www.canadianskin.ca | 7

What the survey revealed The core issues identified through the survey were: • Women+ had different levels of comfort discussing reproductive and sexual health with healthcare providers, romantic partners, and their own support networks • There are important differences in information available about reproductive and sexual health at different stages of life (i.e., contraception, pregnancy, parenting, menopause, etc.), and • More discussion and new resources are needed about the effects of psoriasis, inflammatory arthritis, and rheumatic disease diagnosis, treatment, and care on reproductive and sexual health, and the effects of sexual health on overall health.

Impacts on women+ with these conditions Gaps in information have many impacts on women+ with psoriasis, inflammatory arthritis, and rheumatic conditions. This results in uncertainty surrounding reproductive and sexual health. Communication barriers leave women+ feeling disempowered and unable or unwilling to engage with their healthcare teams and support networks in a robust discussion about how their condition is impacting –

Want to win a

and impacted by – their sexual and reproductive health. Importantly, there is increased pressure and responsibility placed on women+ to be the coordinator and facilitator of their own care without adequate support to make informed decisions, which increases the possibility of adverse outcomes.

Our recommendations Based on the findings of this survey, CAPP, CPN, CAPA and CSA made the following recommendations: 1. Destigmatizing reproductive and sexual health in women+ living with psoriasis, inflammatory arthritis, and rheumatic disease is critical. Sexual and reproductive health is part of a holistic approach to patient care and must be included in discussions about care, treatment, and support.

We recommend that patients, healthcare providers, romantic partners, and support networks raise these topics in conversations about these diseases early and often.

2. Patient education resources must be available to women+ with psoriasis, inflammatory arthritis, and rheumatic conditions, their care teams, and support networks, focused on: a) Communicating effectively with healthcare providers, romantic partners, and loved ones about

$25 gift card?

Simply answer this question: How has your skin condition affected intimacy and sex in your relationships?

Submit your response to info@canadianskin.ca by December 31, 2021, along with your name and contact information, and you will be entered in a draw to win a $25 gift card. Good luck!

In the Summer 2021 issue, we asked readers if they had any questions about how they’d best like to receive their CSPA content.

Congratulations to our contest winner: Francine H. from Québec!

Subscribe To subscribe today to this complimentary magazine, call 1-877-505-2772 or email us at info@canadianskin.ca.

8 | www.canadianskin.ca | Fall 2021

reproductive and sexual health needs and concerns b) Navigating sexual and reproductive health at different life stages c) The impacts of medications on sexual and reproductive health of women+ and the health of children born to or parented by women+ living with these conditions d) The role of mental health and wellbeing as an aspect of sexual health and living with psoriasis, inflammatory arthritis, and rheumatic conditions.

3. Dermatologists and rheumatologists should counsel women+ about the impact of medications and other treatments on sexual and reproductive health early in their disease journey and regularly to ensure patients can make informed decisions.

4. Researchers should consider the sex and gender impacts of access to care, medication safety, mental health, parenting, and aging, and within racialized communities and the LGBTQ2S+ community to ensure that women+ have the best evidence to inform decision-making.

While further research is warranted, implementing these measures will help increase patients’ engagement in their own care and provide them with more comprehensive support to navigate the complex and chronic nature of psoriasis, inflammatory arthritis, and rheumatic conditions.

The survey and report was supported by an educational grant from UCB Canada.

Rachael Manion is the Executive Director of the Canadian Association of Psoriasis Patients and the Canadian Skin Patient Alliance.

Antonella Scali is the Executive Director of the Canadian Psoriasis Network.

Laurie Proulx is a volunteer VicePresident of the Canadian Arthritis Patient Alliance.

Wendy Gerhart is the Executive Director of the Canadian Spondylitis Association.

Victoria Rozycki is a Community Psychology Master’s student at Wilfrid Laurier University and summer research assistant with the Canadian Spondylitis Association.

What ’s new on the research front?

The articles from which these summaries of the latest in skin research are taken are hot off the press!

Top Stories in Research

By Sabrina Ribau

Impact of Hidradenitis Suppurativa (HS) on pregnancy & maternal health Hidradenitis Suppurativa, also known as HS, often affects women of childbearing age. However, the impact of HS on pregnancy and maternal health outcomes is unknown. A study led by a group of researchers in the United States1 set out to see if HS does affect pregnancy and health outcomes for pregnant people compared to those who do not have HS. What they found They looked at the pregnancy outcomes of more than 1,800 pregnancies among 1,600 ethnically-diverse women with HS and compared them to the outcomes of more than 64,000 pregnancies from women without HS. They found that people who had HS had an increased risk for several adverse pregnancy and maternal health outcomes, including spontaneous abortion (loss of pregnancy without outside intervention before 20 weeks’ gestation), preterm birth, gestational diabetes mellitus, gestational hypertension (high blood pressure in pregnancy), preeclampsia, and Caesarean section (C-section).

When they controlled for comorbidities (multiple health conditions present in a person at one time), pregnancies of those who have HS were independently associated with spontaneous abortion, gestational diabetes mellitus, and C-sections.

Implications for people with HS Since there is an increased risk for pregnant people who have HS and other comorbidities, it is important for healthcare teams to work together with HS patients to identify these risk factors early and manage them, particularly among people who are pregnant or those trying to conceive.

Safety & effectiveness of tacrolimus 0.1% for treating facial vitiligo Calcineurin is a protein that activates T-cells (a type of white blood cell) of the immune system which are involved in the development of vitiligo. Topical calcineurin inhibitors, like tacrolimus 0.1%, work to limit the immune response triggered by calcineurin while also stimulating the production of melanocytes (the skin cells that determine skin pigmentation) – both of which can help manage vitiligo.

Currently, topical calcineurin inhibitors are used off-label to treat vitiligo since there is a lack of placebo-controlled, double-blinded studies (studies where neither the participants nor researchers know which treatments the participants received until after the clinical trial is over) to support their use. A team of researchers in France2 decided to try to fill this research gap.

What they found They conducted a study with 42 adults who had recent facial vitiligo (for less than years) that hadn’t changed in shape or colour in the previous three months. The study took place over 24 weeks and they followed up with participants six months after the study.

Participants received either tacrolimus 0.1% ointment or a placebo twice a day for 24 weeks, and were advised to slowly expose themselves to natural sunlight throughout the trial, starting with 5–10 minutes up to 45 minutes per day. At 24 weeks, 65% of patients who were treated with tacrolimus had improved by more than 75% in their skin pigmentation versus 0% in patients who received the placebo.

Relapses (where the skin began to lose pigmentation again) occurred in 40% of participants six months after stopping the treatment.

Implications for people who have vitiligo Tacrolimus 0.1% appears to be an effective treatment option for newer facial vitiligo lesions. Since it’s most effective on vitiligo that is relatively new (only a couple of years old), there is a need for early diagnosis and treatment for vitiligo patients.

Due to the relapses that occurred in some participants, using tacrolimus on an ongoing basis can be justified.

Interestingly, despite the desire to treat the physical and psychological symptoms of vitiligo, there was no significant change in psychological assessments even though there were significant improvements in facial vitiligo – many of the participants still had other visible vitiligo lesions which likely continued to impact their quality of life. Similarly, many participants reported that they didn’t like the greasy texture of the tacrolimus ointment, which can impact people’s desire to use the treatment daily. It is important for future studies and treatments to consider these impacts on vitiligo patients.

Note: Tacrolimus is not approved in Canada to treat vitiligo.

REFERENCES:

1. Fitzpatrick, L., Hsiao, J., Tannenbaum, R., Strunk, A., & Garg, A. (2021). Adverse Pregnancy and Maternal Outcomes in Women with Hidradenitis Suppurativa. Journal of the American Academy of Dermatology. doi:10.1016/j.jaad.2021.06.023 2. Seneschal, J., Duplaine, A., Maillard, H., Passeron, T., Andreu, N., Lassalle, R., Ezzedine, K. (2021). Efficacy and Safety of Tacrolimus 0.1% for the Treatment of Facial Vitiligo: A Multicenter Randomized, Double-Blinded, Vehicle-Controlled Study. Journal of Investigative Dermatology, 141(7), 1728-1734. doi:10.1016/j.jid.2020.12.028

Sabrina Ribau holds a Bachelor of Kinesiology from the University of Toronto and is the Educational Programs Coordinator for the CSPA.

Fall 2021

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Living With…

Life as a burn survivor

By John Hart

In September of 1994, while working for Manitoba Hydro, I was electrocuted while working beside a large transformer putting out 138,000 volts. This caused burns to over 40% of my body, leading to a lengthy hospital stay and the amputation of my right arm and leg.

Skin management After a burn, the skin breaks down and becomes very itchy and fragile; if something touches it firmly, the skin could rub off. Being an amputee on top of it all adds other obstacles to recovery.

The skin on my leg was seriously burnt and they had to take away a lot of my tissue, leaving the end very bony.

They had a hard time fitting a socket for my prosthetic leg so they had to make a special liner for the prosthetic so that it would be more comfortable and cushioned the stump. There are special, tight-fitting garments worn by burn survivors alongside many creams to help with skin healing.

Embracing challenges There are things I could do before that you don’t really think about, you just do them, like putting on a shirt with buttons, tying your own shoes, etc. If you don’t give up on the easy challenges, it could help you to make it through the tougher ones down the road.

I looked forward to challenges – my family learned to not dissuade me from doing something because I would then go and try to do it. I competed in a 5K race in my wheelchair with one arm and one leg – after the race, a lot of

runners came up to thank me because they were encouraged to see me out there competing and cheering them on at the same time.

Peer support When my accident happened, I asked myself, “What kind of a dad am I going to be now?” You always dream of all of the activities and milestones you would do with your family and in that moment, I was worried that I might not be able to still do those things. After my accident, I met a guy who’d lost his arm and leg on the same side of his body.

Seeing someone else doing well despite similar obstacles gave me hope.

There wasn’t a lot of support after leaving the hospital – it wasn’t until a few years later that a group of medical staff started a Burn Survivor Sunday in Manitoba in 1998 to get together with fellow burn survivors and their families.

My family has always been supportive and they joined me for the meetings and conferences.

Going to conferences and support groups for burn survivors is another impactful piece of life as a survivor. The Mamingwey Burn Survivor Society has been a very important part of my life.

The Mamingwey Burn Survivor Society, founded in 2003 from the Burn Survivor Sunday meetings, felt that there was a need for all Canadian survivors to have this kind of support so they organized a three-and-a-half day event in 2005 and called it the Canadian Burn Survivor Conference. Two years later, after a few successful conferences and a meeting

held at the World Burn Congress in 2007, the Canadian Burn Survivors Community was established and Canadian conferences have been held every two years since. I went on to be awarded the first peer support award at the 2018 conference and it felt great to know that embracing and overcoming the obstacles in my life has allowed me to reach out and help other burn survivors to thrive as well.

If this story resonates with you and you’re looking for someone to speak with about living in your skin, reach out to us at info@canadianskin.ca and we will be in touch.

The Mamingwey Burn Survivor Society, based out of Manitoba, provides a safe and nurturing environment for burn survivors, their family members, friends, and caregivers to share their stories, support and learn from one another, and encourages healing of the psychological aspects following a burn injury. www.burnfundmb.ca/mamingwey

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FOCUS

Spot the difference – burn hazards Oh no! Dad fell asleep on the couch and the kids have been left without supervision, surrounded by things that can cause burns!

Can you spot the differences in the picture?

And as a bonus, can you count the burn hazards, too?

Answers can be found on page 14.

Tips for supporting a burn survivor For kids:

For parents:

• It’s natural to be curious: smile and ask them how they’re doing!

• Reach out to a local burn unit or burn survivor society and see if they have a peer support program; some have programs where a burn survivor will go into the school and speak to the class about the changes so that the students and staff are prepared in advance to help ease the child’s re-entry.

• Your friend has gone through some big changes. They might be itchy because the burns are uncomfortable and painful, or there’s a chance your friend will have to wear special clothing to help heal their burns.

Be kind to them even if they might now look different, because they’re still the same great person on the inside!

• There are summer camps for burn survivors that children can attend.

• Fire departments often have resources, too!

Fall 2021

| www.canadianskin.ca | 11

How patients are

shaping research to improve skin conditions

By Dawn Richards, PhD, and Rachael Manion

Have you ever participated in or thought about participating in research? Often when people think about research, they think of being a clinical trial participant.

While that is one important way to contribute to research, did you know that you can also contribute to research by being on a research team and working with the team to design and do the research? This is called patient engagement in research – when you’re part of a research team rather than a participant in a research study.

Patient engagement in research is a relatively new way of doing research.

While researchers and healthcare professionals have scientific and medical knowledge about a disease or condition, they often don’t live with the disease or condition they study or treat. This is where patients come in.

As people who live with a disease or condition daily, patients and caregivers bring this experiential knowledge to the team (sometimes also called ‘lived experience’). People with lived experience might be patients themselves or they might be friends, caregivers, and family members, who also bring a different perspective 12 | www.canadianskin.ca | Fall 2021

than the other members of the research team.

In Canada, skin patients are being invited to be part of research teams more than ever before. Patients might work directly with researchers and healthcare professionals to help understand what patients want new treatments to do – for example, stop the itch, stop the disease from progressing, allow people to move around more comfortably, or cure a disease. They might help the rest of the research team understand how to design a clinical trial so that it is easier for patients to participate – for example, how important it is to reduce the number of times samples are taken from fragile skin.

Or, they might help design the clinical trial so that it actually measures outcomes that are important to skin patients – for example, fewer flares or less intrusion into their intimate life.

You can imagine that there may be some benefits and some challenges about changing how research is done and including patients on the research team – both for patients and researchers. We’ll focus on some of those considerations for patients here.

It’s important to know that patient engagement in research is new for everyone so there may be some ups and downs along the way.

If you’re interested and wondering how you might engage in research happening for skin patients in Canada, here are some places to start exploring: 1. The CSPA (canadianskin.ca) can help connect you with ongoing research projects in specific areas or talk with you about how to find a researcher interested in research questions that are important to you.

2. The Skin Investigation Network of Canada (SkIN Canada, skincanada.org) can help connect you with new research being led by researchers in Canada to benefit patients in Canada.

3. CIHR’s Institute of Musculoskeletal Health and Arthritis (IMHA) has Patient Engagement Research Ambassadors, a group of patients who advise IMHA on its patient engagement work and build resources to help engage patients in research. PERA will have a call in the coming months for opportunities to be involved, and you can read more about PERA at https:// cihr-irsc.gc.ca/e/27297.html.

If you’d like to read more about patient engagement in research or see what resources are available to you, check out IMHA’s Patient Engagement Research Ambassadors (PERA) page that also includes general information about patient engagement, a video, and links to more resources (https://cihr-irsc. gc.ca/e/27297.html). You can also keep in touch with the CSPA through its newsletter Beyond the Surface (https:// canadianskin.us7.list-manage.com/ subscribe?u=528588a4d95d305b1dc6b d0e4&id=038089cca7), and with SkIN Canada through its newsletter (https:// skincanada.org/mailinglistregistry/).

Dawn Richards is an analytical chemist by training. She lives with rheumatoid and osteo-arthritis and works with CIHR IMHA to help lead its patient engagement activities.

Rachael Manion is the Executive Director of the Canadian Skin Patient Alliance and the Canadian Association of Psoriasis Patients. She is also the Chair of the Patient Advisory Council of the Skin Investigation Network of Canada (SkIN Canada).

Benefits & Challenges Some of the benefits to patients in terms of being part of a research team might be to: • bring a different perspective and ways of thinking to the project; • help to define research priorities and outcomes that are important them and their families; • provide opportunities to engage their own patient communities with the research; • explore the potential for new research projects beyond the current research project; and • give students (also called trainees) the chance to learn from engaging patients in research.

Some of the challenges might include: • remembering or potentially sharing information that you might rather not think about or share; • sometimes feeling like your voice or ideas aren’t being heard; and • maybe even feeling left out if you’re the only patient on the team.

Fall 2021

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CSPA IN ACTION

CSPA in action: A spotlight on our latest activities, events and other information of importance to skin patients in Canada

As a home for all people in Canada impacted by skin, hair, or nail conditions, we work closely with leading dermatologists to bring accurate and helpful information to skin patients.

Each year, we recognize the outstanding contributions to the skin patient community of one dermatologist. The CSPA is proud to share that Dr. Raed Alhusayen is the recipient of the 2020 Dermatologist of the Year Award and we wholeheartedly thank him for all his contributions.

of health-related reproductive issues like sexual health, family planning goals, and menopause. Learn more about what four national patient organizations found when they surveyed over 400 people about women’s sexual and reproductive health throughout the life cycle in this issue.

The CSPA continues to bring skin patients’ perspectives on important issues like drug pricing and rare disease care and treatment to policy makers.

Awareness & education The CSPA is expanding our resources for kids and parents by developing activities to teach them about preventing skin disorders and caring for their skin. Check out the Family Focus section of this issue to learn about preventing burns!

Activities for kids living with eczema that help them learn about their condition are also available on our website.

The CSPA has created a glossary of medical terms that are commonly used in dermatology to help patients better understand their condition. Check out the Education section of our website (www.canadianskin.ca/education) to learn more.

We have also added information about pyoderma gangrenosum, hyperhidrosis, and psoriasis to our website.

Updated information about nail fungus, warts, and HPV is also now available on our website. Go to www.canadianskin. ca/skin-conditions-and-diseases to view the full list. If there is something you would like to see included, please let us know at education@canadianskin.ca!

Shaping skin research for patients We are actively working with Canada’s leading dermatologists and skin researchers to identify which unanswered research questions are important to patients. Skin patients’ perspectives are more important to researchers than ever.

To learn more, check out the article in this issue about engaging skin patients and caregivers (loved ones) in research.

Drop us a line at info@canadianskin.ca if you would like to know more about the opportunities that are open to you!

McGill University researchers have launched SunFit, a project to better understand people’s perspectives on sun safety to prevent skin cancers. Check out page 15 for more details about how everyone can participate in the short survey!

Sharing skin patients’ voices People living with psoriatic disease, inflammatory arthritis, and rheumatic diseases are often diagnosed in the prime of their lives when they need to consider a variety

Spot the differences answers

Burn safety hazards: • • • • • • •

Candles within reach of pets Candles in dangerous places A fireplace without a screen Lack of parental supervision Forks in the toaster Burners on the stove left on A hot pot in a dangerous position with no lid

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Awareness days Lupus Awareness Month (October) World Mental Health Day (October 10) National Psoriatic Arthritis Awareness Day (October 19) Canadian Patient Safety Week (October 25–29) Epidermolysis Bullosa Awareness Week (October 25–31) World Psoriasis Day (October 29) Eczema Awareness Month (November) Family Doctor Week (November 8–13) International Volunteer Day (December 5)

CSPA AFFILIATE MEMBERS AboutFace: aboutface.ca Acne and Rosacea Society of Canada: acneaction.ca (acne) rosaceahelp.ca (rosacea)

SunFit Project

Enjoy the outdoors without getting a tan!

A new invasive melanoma (a form of skin cancer) is diagnosed in Canada approximately every hour or ~8,000 patients per year, while 1,300 Canadians die each year from this disease. Sun exposure/ultraviolet radiation remains a critical driving force that promotes melanoma development. The goal of this project, conducted by McGill University scientists, is to understand how different risk factors affect skin melanoma in various Canadian communities. The researchers also want to better understand Canadians' knowledge of skin melanoma, other skin cancers, as well as their beliefs and behaviours pertaining to sun safety practices.

Canadian adults over the age of 16 are eligible to participate. If you are willing to contribute to the Canadian knowledge on melanoma, you will be asked to complete a survey containing questions asking about your baseline knowledge and risk factors for skin cancer, as well as your beliefs and behaviours with regard to sun safety practices.

The survey is available online and will take five to ten minutes to complete.

To complete the survey, visit this secure link: www.sunfit.ca If you have any questions about the research project, please reach out to francois.lagace@mail.mcgill.ca or ivan.litvinov@mcgill.ca.

SPONSOR OF CANADIAN SKIN MAGAZINE AbbVie is the Founding Sponsor of the Canadian Skin Magazine and an ongoing supporter of CSPA’s 2021/2022 publications.

AbbVie is not providing editorial support for the magazine. The CSPA is responsible for the final content featured in Canadian Skin.

CSPA CORPORATE SPONSORS

Alberta Lymphedema Association: albertalymphedema.com BC Lymphedema Association: bclymph.org Camp Liberté Society: campliberte.ca Canadian Alopecia Areata Foundation (CANAAF): canaaf.org Canadian Association for Porphyria: canadianassociationforporphyria.ca Canadian Association of Scarring Alopecias: casafiredup.com Canadian Burn Survivors Community (CBSC): canadianburnsurvivors.ca Canadian Psoriasis Network: cpn-rcp.com Canadian Skin Cancer Foundation: canadianskincancerfoundation.com Chronic Urticaria (Urticaire Chronique): en.urticairechronique.ca DEBRA Canada (epidermolysis bullosa): debracanada.org Eczéma Québec: eczemaquebec.com Eczema Society of Canada: eczemahelp.ca Firefighters’ Burn Fund: burnfundmb.ca Hidradenitis & Me Support Group: hidradenitisandme.ca HS Heroes: hsheroes.ca Melanoma Network of Canada: melanomanetwork.ca Myositis Canada: myositis.ca Neurofibromatosis Society of Ontario: nfon.ca Save Your Skin Foundation: saveyourskin.ca Scleroderma Association of B.C.: sclerodermabc.ca Scleroderma Canada: scleroderma.ca

CANADIAN SKIN MEDICAL ADVISORS + BOARD MEMBERS + VOLUNTEERS Thank you to the Medical Advisors, Board Members, and Volunteers who support the work of the CSPA. To learn more, please visit: canadianskin.ca/about-us.

Scleroderma Manitoba: sclerodermamanitoba.com Scleroderma Society of Ontario: sclerodermaontario.ca Stevens–Johnson Syndrome Canada: sjscanada.org Tumour Foundation of BC: tumourfoundation.ca

2020 2020 Dermatologist of the Year The Canadian Skin Patient Alliance is thrilled to announce Dr. Raed Alhusayen as the 2020 Dermatologist of the Year!

The CSPA recognizes Dr. Alhusayen’s dedicated work to improving the lives of individuals living with skin conditions.

Through his compassionate concern for patients’ welfare and happiness, his outstanding patient care, and his ability to bring research to life in a way that engages patients, Dr. Alhusayen has shown that he is a dedicated supporter of skin patients.

Most notably, his commitment to community service and quality patient care were demonstrated by assisting the CSPA with the development of our 2020 National Report on Patients’ Experiences Living with Hidradenitis Suppurativa (HS).

We thank Dr. Alhusayen and all of the healthcare professionals who continue to support the efforts of the CSPA in informing, educating, and advocating on behalf of the skin patient community!

Thank you!

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