Canadian Skin - Spring 2024

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Improving dermatological care for people with darker skin tones

COMPLIMENTARY www.canadianskin.ca VOLUME 15 � ISSUE 1 CLOSE-UP ON BASAL CELL CARCINOMA ABCs OF A CLINICAL TRIAL The Official Publication of the Canadian Skin Patient Alliance Spring 2024
CANADIAN

SKINfac

Nail fungus

Fungal nail infection occurs when a fungus grows in or underneath the fingernail or toenail, causing the nail to thicken and become discolored. Fungal development is more common in toenails than fingernails.

The following individuals have a higher risk of infection:

• Older adults

• People with immune system and blood circulatory disorders

• Patients with diabetes, psoriasis, or hyperhidrosis

• People with diseased or deformed nails

The following can also increase your risk for infection:

• Working in damp areas

• Using public swimming pools, showers, and gyms

• Consistently wearing closed footwear

• Getting manicures and pedicures at the spa

Fungus is contagious

Did you know that nail fungus can spread from person to person (and even from nails to the skin) through direct contact? It is best to steer clear from walking barefoot in public areas.

Early warning signs

Spotting a fungal infection early on makes treatment easier –and faster. Often the first sign of infection is a white or yellow spot under the tip of the nail. Later, symptoms include changes in the nail’s shape, brittleness, crumbling of the edge of the nail, a loosening or lifting of the nail, white or yellow streaks, or nail thickening. If you notice any of these symptoms, see a dermatologist.

Prevention

Nail fungus thrives in dark, damp environments. Limiting moisture by changing your socks throughout the day is the best form of prevention. Keeping your nails clean and dry will significantly reduce your chances of developing nail fungus.

Additional ways to prevent nail fungus include:

• Regularly clipping your fingernails and toenails

• Wearing slippers or sandals in public locker rooms, pools, and showers

• Not sharing shoes, socks, and nail clippers with others

• Only visiting licensed nail salons that use newly sterilized instruments during your treatment

Treatment

There are several effective treatments for nail fungus, and all take time. Fungus is only “cured” by regrowth of new, healthy nail. Because nails grow slowly, this might take up to a year.

Prescription oral anti-fungal can effectively treat nail fungus; however, it may need to be taken for up to three months before infections completely clear up. Laser treatments have also been found to effectively treat fungus.

Become a CSPA Volunteer!

Are you interested in joining a dedicated patient advocacy organization and contributing to a better world for people living with skin, hair, and nail conditions across Canada? If so, there are many ways you can get involved and help support our community and mission. Let us know by completing this survey –we’d love to hear from you!

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Canadian Skin Patient Alliance: G303-851 Industrial Avenue, Ottawa, ON K1G 4L3 Toll Free: 1-877-505-CSPA (2772) • Email: info@canadianskin.ca Canadian Publication Mail Sales Product Agreement No 40065546. Printed in Canada. Spring 2024 • Volume 15 • Issue 1 ISSN 1923-0729 Publisher: Craig Kelman & Associates www.kelman.ca All rights reserved. ©2024 Contents may not be reproduced. To subscribe to this complimentary magazine, call 1-877-505-2772 or email us at info@canadianskin.ca The Official Publication of the Canadian Skin Patient Alliance Spring 2024 CANADIAN Improving dermatological care for people with darker skin tones Follow us @CanadianSkin
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Questions about lip care and ocular rosacea

AQI’ve heard that lip balm makes lips drier. What is the best way to treat dry lips?

It may seem counterintuitive, yet sometimes lip balms can make your lips drier or irritated because they contain common skin irritants or allergens such as fragrance and/or preservatives. The best way to treat dry lips is to regularly apply an emollient like petrolatum (e.g., Vaseline) throughout the day as needed. Such emollients should have a simple ingredient list and be fragrance-free. These barrier creams are effective particularly in the harsh Canadian winter and should be used before going outdoors. To further prevent dry lips, you should avoid licking them. You may also want to consider rinsing or washing your face after brushing your teeth. This ensures that toothpaste – which contains fluoride, preservatives, and minty fragrances – does not linger on your lips.

Should these suggestions not provide relief, we recommend that you make an appointment with your primary healthcare provider for further evaluation of potential conditions that cause dry lips and to determine if a referral for a dermatologist is needed.

AQI have rosacea and recently noticed my eyelids are red. What can I do about this?

Rosacea is a chronic skin condition characterized by redness, visible blood vessels, red bumps, and occasionally pustules on the central face region including your nose, cheeks, chin, and middle forehead. It can also impact the eyes – a condition known as ocular rosacea. Some patients with eye inflammation may develop infections, like styes. To manage your rosacea, you should begin by minimizing exposure to triggers (e.g., sun, heat, alcohol, hot drinks, and spicy food) and limiting facial products to a gentle cleanser, moisturizer, and mineral sunscreen. Also, use makeup sparingly. Warm compresses applied for 10 minutes twice a day can help to decrease inflammation around the eyes. If your eyes remain red, contact your doctor who may suggest eye drops, a cream, or an antibiotic ointment that can be safely applied to the area. An optometrist or an ophthalmologist is also trained to manage ocular rosacea. Routine appointments with a specialist may be recommended if your rosacea is affecting your eyes. In severe cases, oral antibiotics may be required. Finally, several other conditions may cause red eyelids and mimic rosacea. It is important that your condition is assessed in person by a healthcare professional for accurate diagnosis and appropriate management.

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

Dr. Raed Alhusayen is a consultant dermatologist at Sunnybrook Health Sciences Centre in Toronto, Ontario.

Dr. Dimitra Bednar is a dermatology resident at the University of Toronto.

ASK THE EXPERT
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Beacon hope for Canadians

Imagine having a medical condition so rare that it affects only one to two people in a million. These rare conditions, known as orphan diseases, are often challenging for doctors to diagnose and manage due to their low prevalence. Defined by the US Rare Diseases Act as diseases that affect less than 1/200,000 people per year, orphan diseases impact approximately 8% of Canadians.1 Two thirds of these individuals are children, with ~30% mortality by five years of age. Eighty-five percent of rare diseases are genetic and more than 1,000 rare diseases involve the skin2,3, making it imperative for dermatologists to have these conditions on their radar.

Among these genetic conditions, a group termed ‘genodermatoses’ particularly affects the skin. Genodermatoses are increasingly being recognized and diagnosed thanks to modern technology known as next-generation sequencing (NGS). NGS has uncovered over 166 new links between genes and inherited skin diseases, opening doors for potential targeted therapies at the molecular or protein level.4 Treatments targeting the very roots of genetic skin conditions are bringing hope to those affected.5 Beyond finding the reason for why these rare disorders occur, understanding the genetic

basis of skin disease can give insights into new therapies. This process is the cornerstone for precise and personalized approaches in medicine when dealing with rare diseases.

REAL STORIES:

The power of diagnosis and treatment

Advanced genetic testing plays a crucial role in the diagnosis and treatment of rare skin diseases. In one instance, a premature baby exhibited extremely tight skin, signaling a lethal genetic skin disease called restrictive dermopathy. While the diagnosis was suspected by genetics and dermatology, swift genetic testing confirmed it, providing the family

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“ Embracing the urgency to unravel these mysteries, advancing research becomes not just a scientific imperative but a beacon of hope, illuminating the path towards understanding, treatment, and ultimately, relief for those touched by the rarity of their skin conditions.

with vital information to make informed decisions about their child’s care.

Another powerful example involves siblings with severe eczema who were unresponsive to therapy. Genetic testing identified a specific mutation, leading to access to a targeted inhibitor medication. This treatment, typically approved for blood cancers, brought immense relief from unbearable skin symptoms but would not have been authorized without the genetic diagnosis.

The current Canadian landscape for those grappling with genodermatoses is complex and fragmented. Care relies heavily on a few specialized clinics/ individuals across the country, leaving many undiagnosed individuals without access to essential registries, advanced investigations, participation in research, and new treatment modalities.

The Hospital for Sick Children (SickKids) in Toronto and the Centre Hospitalier Universitaire Sainte-Justine (CHUSJ) in Montreal house specialized genodermatoses clinics. Led by Drs. Elena Pope and Irene Lara-Corrales, SickKids initiated a multidisciplinary clinic in 2012 equipped with pediatric dermatologists, geneticists, genetic counselors, and dedicated dermatology nurses. The clinic also has a funded registry that seeks to understand patients’ unique characteristics and genetic makeup, which helps in diagnosing those without a definitive conclusion. Other tertiary centres across the country have similar models of care, though without funding and dedicated support, patient care relies on individual dedicated providers. Importantly, most places in Canada don’t have such resources, leaving many children undiagnosed and without access to registries or other programs for advanced investigations.

PIONEERING CHANGE:

The Canadian Genodermatoses Network Recognizing these challenges, the Canadian Genodermatoses Network –

a pioneering initiative – aims to revolutionize care and research for those with genetic skin disorders in Canada. Its primary goal is to transform the diagnosis, management, and treatment by breaking down existing barriers.

This ambitious network seeks to unite clinicians, scientists, industry partners, and patient organizations to achieve:

• Enhanced clinical care: By fostering collaboration, the network plans to ensure consistent access to genetic testing and innovative therapies for patients and their families.

• Facilitated research: By establishing centralized databases and biobanks, the network hopes to streamline patient recruitment for studies and advocate for faster approval pathways for innovative therapies.

• Stimulation of innovation: By creating a platform for stakeholders to collaborate, the network strives to inspire the development of tailored therapies for patients with genodermatoses.

To realize these objectives, a structured approach has been outlined:

• Short-term goals: Execute an inaugural scientific meeting involving key stakeholders including dermatology and genetics doctors, basic science researchers, patient organizations, and industry partners to understand the Canadian landscape, develop organizational structures, and foster collaboration.

• Long-term vision: Secure ongoing funding, establish comprehensive databases, and advocate for improved pathways for therapies and diagnostics.

“In the intricate tapestry of human genetics, rare skin diseases are the unique threads that weave a complex narrative,” says Tina Boileau, president of DEBRA Canada, an organization dedicated to raising public awareness about epidermolysis bullosa.

“Embracing the urgency to unravel these mysteries, advancing research becomes not just a scientific imperative but a beacon of hope, illuminating the path towards understanding, treatment, and ultimately, relief for those touched by the rarity of their skin conditions.”

Close to 100 representatives from various fields gathered at a meeting in Toronto on April 5, 2024 to shape the vision for the Canadian Genodermatoses Network. By harnessing collective expertise and unwavering dedication, this initiative strives to pave the way for improved care, groundbreaking research, and ultimately, brighter futures for Canadians navigating the challenges of genetic skin conditions.

Dr. Irene Lara-Corrales is a pediatric dermatologist at The Hospital for Sick Children in Toronto, Ontario.

Dr. Catherine C. McCuaig is a pediatric dermatologist at the CHU SainteJustine in Montreal, Quebec

Dr. Elena Pope is a pediatric dermatologist at The Hospital for Sick Children in Toronto, Ontario.

Dr. Michele Ramien is a pediatric dermatologist at the Alberta Children's Hospital in Calgary.

Dr. Wingfield Rehmus is a pediatric dermatologist at BC Children's Hospital in Vancouver.

REFERENCES:

1. Sardana D., Zhu C., Zhang M., Gudivada R.C., Yang L., Jegga A.G. Drug repositioning for orphan diseases. Brief Bioinform. 2011;12(4):346-356. doi:10.1093/bib/bbr021

2. Saeidian A.H., Youssefian L., Vahidnezhad H., Uitto J. Research Techniques Made Simple: Whole-Transcriptome Sequencing by RNA-Seq for Diagnosis of Monogenic Disorders. J Invest Dermatol 2020;140(6):1117-1126.e1. doi:10.1016/j.jid.2020.02.032

3. Amberger J.S., Bocchini C.A., Scott A.F., Hamosh A. OMIM.org: Leveraging knowledge across phenotype–gene relationships. Nucleic Acids Res. 2018;47(Database issue):gky1151-. doi:10.1093/nar/gky1151

4. Chiu FP-C., Doolan B.J., McGrath J.A., Onoufriadis A. A decade of next-generation sequencing in genodermatoses: The impact on gene discovery and clinical diagnostics*. Brit J Dermatol 2021;184(4):606-616. doi:10.1111/bjd.19384

5. Morren M.A., Legius E., Giuliano F., Hadj-Rabia S., Hohl D., Bodemer C. Challenges in Treating Genodermatoses: New Therapies at the Horizon. Front Pharmacol. 2022;12:746664. doi:10.3389/fphar.2021.746664

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Close-up on: Basal cell carcinoma

What is basal cell carcinoma (BCC)?

Basal cell carcinoma (BCC) is the most common type of skin cancer, and the most commonly diagnosed cancer in Canada. Generally, it is the least aggressive form of skin cancer. Ultraviolet (UV) radiation from the sun is the primary cause of BCC. The disease often develops on the head and neck, but can also be found on the upper chest, hands, and feet. BCC typically emerges as a small, glistening, pinkish, non-healing bump that bleeds easily and grows over time. In patients with more pigmented skin, it may appear as a shade of brown and/or black.

Who is at risk of getting BCC?

Although anyone can develop BCC, fair-skinned individuals are at greatest risk and have a 30–40% chance of developing the disease throughout their lifetime. Sunburns –especially in childhood – and intense exposure to UV rays from the sun or tanning beds also play an important role. Additionally, exposure to environmental elements like arsenic and certain diseases which weaken your immune system put you at greater risk. People may suffer from BCC as early as in their 20s and 30s, but the risk increases with age.

How do you manage and treat BCC?

For most patients (~98–99%), BCC can be easily managed. BCC cells tend to remain locally on the skin and do not spread to ganglions (lymph nodes) or to other organs when it is a small cancer. Normally, most forms of BCC can be treated with minor surgery performed by a dermatologist or another surgeon. However, some forms of BCC may be more aggressive and invade and destroy tissue faster. A subset of these high-risk forms of BCC may become

very large and impossible to remove with surgery or spread elsewhere in your body. High-risk BCC and BCC found on areas such as your face, where skin tissue is less abundant, can be removed with a special procedure called Mohs surgery. Performed under local anesthesia, Mohs surgery involves extracting thin layers of skin that are then examined under a microscope to determine if any cancer remains. A chemotherapy cream can treat very superficial BCC, while radiotherapy can also shrink BCC tumors. Should surgery and radiation not be viable options, a pill known as a sonic hedgehog inhibitor (vismodegib or sonidegib) is prescribed to specifically target the most common genetic changes found in the cancer. Finally, in rare cases for which the above treatments do not

work, immunotherapy injections are administered by medical oncologists to boost your immune system.

How can you prevent BCC?

Protecting yourself from the sun’s harsh rays is key to preventing BCC. This can be done by avoiding sunlight between 9 am and 4 pm, wearing long-sleeve clothing, and regularly applying a generous amount of sunscreen. Since treating BCC early may lead to positive outcomes with minimal long-term intervention, be sure to consult your family doctor or dermatologist if you notice a suspicious or worrisome lesion on your skin.

Dr. Philippe Lefrançois is a dermatologist at the Jewish General Hospital in Montreal, Quebec.

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Advancing treatments for people living with atopic dermatitis

Living with atopic dermatitis (AD) can make each day a challenge, affecting routine activities, relationships, work or school performance, and overall quality of life. The persistent, itchy, and red skin associated with AD can also lead to feelings of self-consciousness and impact sleep and mood.

Moreover, frustration can escalate when treatments lose effectiveness, dampening hope for long-term control. However, the world of AD is witnessing a wave of novel therapies offering renewed optimism for clearer skin and enhanced well-being.

Traditionally, solutions were limited to topical creams or ointments, including moisturizers, steroids, and non-steroid topicals (calcineurin and

phosphodiesterase inhibitors). While helpful for some, these treatments have limitations, with potential intolerance and some restrictions on long-term use. The bright side is that newer treatments address these gaps.

JAK (Janus Kinase) inhibitors –well-established in treating other inflammatory diseases such as arthritis and colitis – have now found a place in AD care. Selective JAK inhibitors like abrocitinib and upadacitinib offer a convenient once-a-day pill, providing rapid relief from itching, clearer skin, and improved sleep. However, like any medication, JAK inhibitors come with considerations, including an increased risk of acne, nausea, and infection. Your doctor will monitor you while on

the medication with blood tests and regular assessments.

Biologics (drugs made from a living organism) offer a targeted approach to AD treatment. Administered via injection, these medications inhibit specific proteins and disrupt the inflammatory pathways causing AD symptoms. With approvals for all age groups from six months and older for dupilumab and 12 years and older for tralokinumab, biologics can be very effective despite risks like conjunctivitis (eye redness and irritation) and injection site redness.

Excitingly, new non-steroid topicals are on the horizon, including topical JAK inhibitors such as ruxolitinib. Already approved in the US, this drug may soon be available in Canada for ages 12 years and older. Other medications such as tapinarof and roflumilast offer additional hope for those seeking alternatives to their current topical medications.

From innovative oral and injectable medications to promising non-steroid topicals, the evolving treatment landscape has introduced a range of options to help affected individuals navigate the challenges of AD. In looking to the future, the advancement of critical research in dermatology remains key to ensuring better outcomes for skin patients across Canada.

Dr. Melinda Gooderham is a dermatologist at the SKiN Centre for Dermatology in Peterborough, Ontario.

WHAT’S NEW IN Dermatology 7 Spring 2024 | www.canadianskin.ca |

BECOME A MONTHLY DONOR!

The Canadian Skin Patient Alliance (CSPA) is constantly striving to make a meaningful impact on the lives of those we serve. By becoming a monthly donor, you will be joining a special group of dedicated individuals who provide us with the consistent support we need to plan and execute our programs effectively. Your monthly contribution, no matter the size, will enable us to maintain and expand our initiatives, ensuring that our community continues to benefit from the vital services we offer.

Why should you consider becoming a monthly donor?

• Sustained impact: Monthly donations provide us with a predictable source of income, allowing us to focus more on our mission and less on fundraising efforts.

• Efficiency: Your recurring donation minimizes administrative costs, ensuring that the majority of your contribution goes directly into our programs.

• Exclusive updates: As a monthly donor, you will receive regular updates on the impact of your contribution, allowing you to witness firsthand the change you are making. Become

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a monthly donor today, at https://canadianskin.ca/getinvolved/donate. Help

Improving dermatological care for people with darker skin tones

In Canada and the United States, there are noticeable differences in health outcomes between people with darker skin tones and those with lighter skin tones.1,2 These disparities are particularly significant in the field of dermatology, given challenges such as limited access to care, difficulties navigating cultural differences, variations in the presentation of skin conditions, and differences in treatment approaches across various skin tones. The convergence of these factors compounds the underrepresentation of individuals with darker skin tones in dermatology clinical trials, further amplifying preexisting health disparities.

Geographical and financial barriers

times and limited resources. This limited access to healthcare facilities, especially in rural areas, significantly contributes to delayed diagnosis and treatment for individuals with darker skin tones.

Individuals with darker skin often encounter difficulties in reaching dermatologists and accessing general healthcare services compared to their white counterparts.3 Research has shown that individuals hospitalized for psoriasis are more likely to be from ethnic groups such as Hispanic, Asian, Black, or multiracial/other than white.4

The higher rates of hospitalization indicate that a significant proportion of severe cases is not adequately managed for individuals with darker skin tones.4

Difficulties providing culturally sensitive care

Cultural perspectives can significantly impact decisions regarding seeking medical care, especially for individuals with darker skin tones. In a case study from Toronto, Ontario, one patient shared that he was told psoriasis does not affect Black people.6 The lack of culturally sensitive care poses a significant obstacle for individuals with darker skin tones, causing a delay in seeking necessary care and receiving appropriate treatment.6 Non-white participants were more likely to cite the absence of cultural sensitivity as a crucial barrier to seeking assistance for their skin conditions.5

and the factors that contribute to their worsening can vary among different racial and ethnic backgrounds.8 Unfortunately, medical training and materials often lack comprehensive descriptions of these variations.7 This information gap may result in underdiagnosis and misdiagnosis within this population. Consequently, healthcare professionals may not be widely aware of the distinctive characteristics of skin conditions in people with darker skin tones.

According to an online survey, more than 70% of respondents with skin conditions considered the high cost of care as the greatest obstacle to seeking medical care.5 Interestingly, the perceived severity of this financial barrier was greater amongst Black participants compared to their white counterparts.5 While a publicly funded healthcare system in Canada may cover essential services, access to specialized care can still be hindered by long wait

Many patients express a preference for dermatologists of colour, emphasizing the comfort and understanding they experience during these interactions.3 Importantly, this issue highlights a broader concern –the inadequate representation of individuals with darker skin tones in dermatology teaching and reference materials. Dermatology training predominantly focuses on skin diseases in white patients, revealing a crucial need to improve representation of dark skin tones in educational materials.7

Variations in presentation

Skin conditions can manifest differently in individuals with darker skin tones. The way these conditions are spread across the skin, their overall severity,

Moreover, individuals in this group may encounter difficulties in accessing specialists who are well-versed in diagnosing skin conditions in darker skin tones. The limited focus in dermatological education amplifies the issue, leading to a shortage of culturally sensitive care and contributing to misdiagnoses and health outcome disparities. In critical cases, such as melanoma, where the five-year survival rate for Black patients is 66% compared to 90% for white patients, these misdiagnoses can pose life-threatening risks.9 Such disparities can be disheartening and worrisome for patients with darker skin tones.

Variations in treatment approaches

Since dermatological conditions can present differently in people with darker skin, there’s a risk of both overtreatment and under-treatment in minority communities. Research indicates that individuals with darker skin tones are less aware of and less likely to receive biologic therapies in comparison to their white counterparts.10 Given the essential role biologics play in treating moderate-to-severe psoriasis, this notable disparity in approaches

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may lead to insufficient or unsuitable treatment for individuals with darker skin tones.

Importantly, there are differences in how well treatments work among various racial and ethnic groups participating in clinical trials.6,11 Past research suggests that individuals with darker skin tones in clinical trials might experience reduced or unclear effectiveness and safety of treatments compared to those with lighter skin tones.6,11-13 The insufficient information on treatment efficacy for individuals with darker skin tones, coupled with evidence showing variations in treatment effectiveness among different racial and ethnic groups in research trials, implies that individuals with darker skin tones might be at a higher risk of not receiving appropriate treatment compared to their white counterparts.

Intersecting challenges leading to underrepresentation in clinical trials

considerations impacting individuals’ decisions to seek medical attention for their skin conditions. This limited access and financial burden contribute to a lack of diversity in the demographic representation in clinical trials.

Secondly, the absence of culturally sensitive care amplifies the problem. Misunderstandings about specific skin conditions related to darker complexions can result in anxiety-inducing interactions with dermatologists. Doubts about a doctor’s training and expertise, coupled with limited access to specialists knowledgeable about unique presentations in individuals with darker skin, may discourage participation in clinical trials. Many patients express a preference for dermatologists of colour, highlighting the need for culturally sensitive healthcare, which is often lacking.

health disparities. Addressing these interconnected issues is important to achieving equitable healthcare outcomes for all patients, regardless of their skin tone.

REFERENCES:

1. Mahajan, S., Caraballo, C., Lu, Y., Valero-Elizondo, J., Massey, D., Annapureddy, A., Roy, B., Riley, C., Murugiah, K., Onuma, O., Nuñez-Smith, M., Forman, H. P., Nasir, K., Herrin, J., & Krumholz, H. M. (2021b). Trends in di erences in health status and health care access and a ordability by race and ethnicity in the United States, 1999-2018. JAMA, 326(7), 637. https://doi.org/10.1001/ jama.2021.9907

2. Ramraj, C., Shahidi, F. V., Darity, W. A., Kawachi, I., Zuberi, D., & Siddiqi, A. (2016b). Equally inequitable? A cross-national comparative study of racial health inequalities in the United States and Canada. Social Science & Medicine 161, 19–26. https://doi.org/10.1016/j.socscimed.2016.05.028

3. Heath. (2021). Psoriasis. The Journal of Family Practice, 70(6). https://doi.org/10.12788/jfp.0241

4. Hsu, D. Y., Gordon, K. B., & Silverberg, J. I. (2016). The inpatient burden of psoriasis in the United States. Journal of the American Academy of Dermatology, 75(1), 33–41. https://doi.org/10.1016/j. jaad.2016.03.048

Clinical research, especially trials, plays a crucial role in finding safe and effective treatments for various skin conditions. However, there is a significant issue when it comes to including individuals with darker skin tones in these trials, leading to a historical lack of representation for this group.12,14,15

A study examining 626 trials for skin conditions from 2010 to 2015 discovered that 74.4% of all participants were white.14 The lack of diversity was even more pronounced in psoriasis trials, with 84.3% of participants being white.14 Another study highlighted that trials for specific biologic therapies primarily enrolled 67–95.4% white participants, leaving an important gap in our understanding of how treatments affect individuals with darker skin tones.12

The combination of several challenges faced by individuals with darker skin tones contributes to their limited participation in clinical trials.

In summary

Thirdly, variations in the presentation of skin conditions in individuals with darker skin tones pose challenges in both diagnosis and recruitment for clinical trials. The lack of comprehensive descriptions of these variations in medical training and materials may lead to underdiagnosis and misdiagnosis. This contributes to a knowledge gap among healthcare professionals about the unique features of skin conditions in this population. Consequently, individuals with darker skin tones may not be appropriately identified and recruited for clinical trials.

Lastly, disparities in treatment approaches, such as the limited familiarity and access to biologic therapies for individuals with darker skin tones, create an additional barrier. Clinical trials may primarily enroll participants familiar with specific treatments, resulting in the underrepresentation of those less likely to receive certain therapies. This further widens the gap in understanding how treatments may impact individuals with darker skin tones, perpetuating the cycle of underrepresentation.

5. Bray, J. K., Cline, A., McMichael, A. J., & Feldman, S. R. (2019). Di erences in healthcare barriers based on racial and/or ethnic background for patients with psoriasis. Journal of Dermatological Treatment, 32(6), 590–594. https://doi.org/10.1080/09546634.20 19.1687824

6. Nicholas, M. N., Chan, A. R., & Hessami-Booshehri, M. (2020). Psoriasis in patients of color: Di erences in morphology, clinical presentation, and treatment. Cutis, 106(2S). https://doi. org/10.12788/cutis.0038

7. Gupta, R., Ibraheim, M. K., Dao, H., Patel, A. B., & Koshelev, M. (2021). Assessing dermatology resident confidence in caring for patients with skin of color. Clinics in Dermatology, 39(5), 873–878. https://doi.org/10.1016/j.clindermatol.2021.08.019

8. Alexis, A. F., Sergay, A., & Taylor, S. C. (2007). Common dermatologic disorders in skin of color: A comparative practice survey. PubMed, 80(5), 387–394. https://pubmed.ncbi.nlm.nih. gov/18189024

9. Culp, M., & Lunsford, N. B. (2019). Melanoma among NonHispanic Black Americans. Preventing Chronic Disease, 16 https://doi.org/10.5888/pcd16.180640

10. Hodges, W. T., Bhat, T., Raval, N. S., Herbosa, C., Ugwu-Dike, P., Kwatra, S. G., Musiek, A., Mann, C., & Semenov, Y. R. (2021). Biologics utilization for psoriasis is lower in black compared with white patients. British Journal of Dermatology, 185(1), 207–209. https://doi.org/10.1111/bjd.19876

11. Kaufman, B. P., & Alexis, A. F. (2017). Psoriasis in Skin of Color: Insights into the Epidemiology, Clinical Presentation, Genetics, Quality-of-Life Impact, and Treatment of Psoriasis in Non-White Racial/Ethnic Groups. American Journal of Clinical Dermatology, 19(3), 405–423. https://doi.org/10.1007/s40257-017-0332-7

12. Alexis, A. F., Desai, S. R., Han, G., & Jacobson, A. (2021). FixedCombination Halobetasol propionate and Tazarotene lotion for psoriasis in patients with skin of color. Journal of Drugs in Dermatology, 20(7), 744. https://doi.org/10.36849/jdd.735

13. McMichael, A. J., Desai, S. R., Qureshi, A., Rastogi, S., & Alexis, A. F. (2018). E cacy and Safety of Brodalumab in Patients with Moderate-to-Severe Plaque Psoriasis and Skin of Color: Results from the Pooled AMAGINE-2/-3 Randomized Trials. American Journal of Clinical Dermatology, 20(2), 267–276. https://doi. org/10.1007/s40257-018-0408-z

14. Charrow, A., Xia, F., Joyce, C., & Mostaghimi, A. (2017). Diversity in dermatology clinical trials. JAMA Dermatology, 153(2), 193. https://doi.org/10.1001/jamadermatol.2016.4129

with 84.3% of participants being white. tones. a significant hurdle, with financial white.

Firstly, challenges related to geography and finances restrict access to dermatological care for individuals with darker skin tones. Limited access to healthcare facilities, especially in rural areas, can lead to delayed diagnoses and treatment. The higher cost of care, as highlighted in surveys, poses a significant hurdle, with financial

Altogether, a lack of access to care, lack of culturally sensitive care, variations in the presentation of skin conditions, and disparities in treatment approaches leads to differences in health outcomes for individuals with darker skin tones. These challenges intersect, leading to the underrepresentation of this group in clinical trials and amplifying

15. Ha, M. V., & Wong, C. (2021). Racial representation in clinical trials for dermatological new molecular entities. Clinical and Experimental Dermatology, 47(2), 386–388. https://doi. org/10.1111/ced.14871

Darshana Seeburruth is a second-year medical student and Dr. Muskaan Sachdeva is a secondyear dermatology resident at the University of Toronto in Ontario. trials. reduced at trials, leading to a historical lack of group. tones.

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ABCs of a clinical trial

Medical research has led to amazing breakthroughs for people living with skin disease. Scientists spend years conducting experiments to expand their knowledge and explore different treatments that may help improve and/ or save lives. When a potential new form of treatment or prevention (e.g., a drug or medical device) is developed, researchers carry out clinical trials to determine whether and how it may help under specific conditions.

What is a clinical trial?

A clinical trial is a type of research study that tests the safety and effectiveness of a treatment among people with a particular health condition. In some trials, the same treatment is administered to all participants; in other trials, some participants are given the new treatment while the remaining participants (known as the “control group”) may be assigned an existing treatment or a placebo (e.g., sugar pill).

What are randomization and blinding?

Randomization is a process used to ensure that each participant in a clinical trial has an equal chance of being assigned to the treatment group or the control group. Usually, the researchers rely on a computergenerated number so that none of the people involved in the study –participants, doctors, and researchers – can predict which treatment each participant will receive. Additionally, many trials use “blinding,” whereby both the doctor and patient do not know to which group the patient

has been assigned (this information is tracked separately). While the uncertainty associated with randomization and blinding may make some patients uncomfortable, they ensure that the results of the clinical trial are not influenced by people’s biases regarding the potential of a new treatment.

What can I expect if I’m in a clinical trial?

Every clinical trial is different in terms of time commitment and expectations. For trials involving new medications, participants typically must attend frequent clinic appointments and undergo special procedures including additional blood tests. Other trials, known as pragmatic trials, try to make the experience for both patients and clinicians similar to regular clinical care.

What else should I know about participating in a clinical trial?

Society benefits from clinical trials because they help determine whether treatments are safe and effective, and contribute to the discovery of important medical breakthroughs. However, the decision to participate in a study is a personal one and should be left up to the patient. While some people gain access to cutting-edge therapies that may improve their condition, there is always the risk that the new treatment is ineffective, or that the participant is assigned to receive a placebo (no active treatment). For more information on clinical trials, visit www.canadianskin.ca/ research/clinical-trials.

Dr. Aaron Drucker is a dermatologist and a clinician-scientist at Women’s College Hospital and the University of Toronto in Ontario.

BEHIND THE SCENES IN
11 Spring 2024 | www.canadianskin.ca |

Morphea

When I was about eight years old, I was diagnosed with an autoimmune disease known as generalized morphea, a type of localized scleroderma. Morphea is a rare condition that causes hardening and discoloration of the skin.

My journey began with a small lesion on my right glute resembling a bruise, which rapidly expanded, prompting concern and uncertainty. Seeking clarity, we consulted a specialist, and a skin biopsy confirmed the presence of morphea. While the diagnosis provided a degree of comfort, it also instilled fear due to the rarity of the skin condition and the unclear prognosis. The spectrum ranged from a potential, simple, cosmetic issue to the prospect of fullblown disfigurement. Even though we didn’t always know what to expect with my skin condition, my family and doctors helped a lot. Having patient, compassionate, and curious physicians made a big difference to us.

Due to the rapid onset of my condition, the prescribed route involved immunosuppressive medication, specifically methotrexate and prednisone. While these medications are effective, they come with a multitude of side effects, such as stomach issues and persistent fatigue. Moreover, the regular and often perplexing medical appointments – particularly during my pre-teen and teen years – added another

layer of complexity. As children grappling with health challenges, we often find ourselves in a difficult world, trying to make sense of it all. I believe there is a pressing need for more comprehensive education tailored to young children and adolescents in order to empower them with the knowledge and skills they require to better understand and manage their health.

Despite the challenges presented by morphea, I’ve come to realize at the age of 25 that this experience has fueled my personal growth and resilience. Adversity, rather than being inherently negative, can serve as a catalyst for positive development. The unpredictability of the good and bad days has moulded me into a more adaptable person and endowed me with the ability to face the unknown with an optimistic mindset, and for that I am grateful. Living with a rare skin condition has also prompted me to become an advocate for myself – something I have carried in other parts of my life – as well as an advocate for others, especially marginalized individuals in various aspects of life. By openly discussing my experiences, I aim to contribute to a more inclusive dialogue and shape a more compassionate, informed, and supportive community while pushing for positive changes in healthcare practices and attitudes.

By openly discussing my experiences, I aim to contribute to a more inclusive dialogue and shape a more compassionate, informed, and supportive community while pushing for positive changes in healthcare practices and attitudes.
Li ng With…
12 | www.canadianskin.ca | Spring 2024

Bullying, self-esteem, and mental health

Many people don’t know much about facial differences. It is common for kids and even adults to be curious and to ask questions.

If you have a visible difference, it can be helpful to practice some answers to common questions you receive about your appearance. For example, you can reply, “I have a skin condition called eczema that comes and goes. It’s not contagious.”

Choosing when to answer, though, is up to you. You do not need to share information about your difference unless you feel comfortable.

Dealing with bullying

Sometimes, questions and comments about a person’s difference are intended to be hurtful. Bullying can be obvious and threatening, or it can be a “microaggression,” meaning it is hard to recognize. It can include staring too long, teasing masked as “joking,” being continually excluded, and comments that are hurtful in tone.

If you are experiencing bullying behaviour, try to act calm. It is normal to feel strong emotions but remember that the bully is looking for a reaction from you. Visualize and practice in advance. Imagining a possible encounter and preparing a response can help you feel stronger. Should you feel threatened or uncomfortable, walk away to a friend, a group, or a supervised space. Or if you are being cyberbullied, do not respond or bully back. Block the bully and show the posts or comments to a trusted adult.

Remember: Bullying is never okay. You have the right to be treated respectfully and to feel safe.

Facial difference resources

Designed for the classroom and recreation settings, there are helpful resources that explain facial differences and show that everyone is different in their own way. “A Lesson from Frankie and Pearl” (https://frankieandpearl. ca) is an animated video telling the story of a young girl with a birthmark navigating her first day at a new school.

Self-esteem and mental health

Developing a healthy sense of selfesteem is an important lifelong skill. It affects how motivated you feel, how easily you bounce back from things that are difficult, and what you feel you can accomplish.

Tips for building self-esteem

Be aware of how you talk about yourself. Are you using kind words (the same way you’d speak about a friend)?

Find a friend who is positive and supportive. Be patient – friendship takes time!

Practice good mental health habits. Getting outside regularly, finding activities you enjoy, and helping others are all mental health boosters.

Know that it’s normal for some days to be harder than others. On the harder days, be kind to yourself.

Check in with yourself on your moods and energy. If you’re having more bad days than good ones, reach out for help.

For resources on facial differences, self-esteem, and mental health, visit aboutface.ca/publications.

Adriana Lombardo-Fernandez is the co-executive director and program manager – Children, Youth & Families at AboutFace, a national charity that advocates for awareness and acceptance of facial differences.

FOCUS
13 Spring 2024 | www.canadianskin.ca |

Lichen sclerosus

Lichen sclerosus is a chronic inflammatory skin disorder that affects the anogenital region. It can cause itching, burning, soreness, and pain with sexual intercourse.1,2,3,4 At times, the skin may appear whitened, wrinkled, and thinned.3,4,5

Lichen sclerosus can impact people of all ages, including children. Peaks occur in childhood, before puberty, and after menopause. Postmenopausal women are at greatest risk5,6; 1 in 1,000 women have the condition. Lichen sclerosus affects more women than men, with estimates ranging from six to 10 women for every one man.3

While there is no permanent cure for this chronic lifelong condition, symptoms can be well controlled with treatment involving strong steroid ointments.3,4,5,6,7

There are several important reasons to treat lichen sclerosus:

• 2–5% increased risk of developing squamous cell carcinoma3,4, a form of skin cancer.

• Risk of progression to irreversible vulvar scarring, resorption (i.e., disappearance) of the clitoris and/or labia.2,3

• Profound impact on quality of life and sexual health, including pain, dysfunction, distress, and negative self-image.1,2

Lichen sclerosus can usually be diagnosed by a physician who is familiar with the condition. However, sometimes a small sample of the skin may be required.4,5 Regular self-examinations and follow-up with your physician for ongoing support and management are recommended.

TIPS FOR HEALTHIER SKIN Winter skin care

Canadian winters can be challenging, and there is no more important time of year to keep your skin hydrated. The season brings cold air and indoor heating, both of which can dry your skin and make it more prone to itching, cracking, and discomfort. In fact, the Earth is actually closer to the sun during winter months, and a heavy snowfall can reflect up to 90% of the sun’s ultraviolet radiation, increasing the risk of photodamage and skin cancer.  With a few simple steps, you can protect your skin and still enjoy your favourite activities!

• Carry moisturizer. Regularly apply your favourite moisturizer

throughout the day. Avoid exfoliating scrubs and washes containing benzoyl peroxide and salicylic acid, as well as hand sanitizer when possible since these products can dry your skin.

• Practise sun safety. Use a trusted brand of sunscreen (ideally rated at SPF 50 or more) and frequently reapply it to exposed skin, including commonly neglected areas such as your hands, legs, soles of the feet, and lips.

• Promote hydration and prevent evaporation. Drink enough water (about 1.5 to 2.5L for most adults), deploy a humidifier at home,

Rare Diseases

Dr. Marlene Dytoc is a dermatologist and Dr. Kaylin Bechard is a dermatology resident at the Kaye Edmonton Clinic in Alberta.

REFERENCES:

1. Alyssa B. Smith, Náimah I. Muhammad, Sarah T. Cigna, Jill M. Krapf, A systematic review of sexual health consequences among women with lichen sclerosus, Sexual Medicine Reviews, Volume 11, Issue 1, January 2023, Pages 8–14, https://doi.org/10.1093/ sxmrev/qeac002.

2. Arnold S., Fernando S., Rees S. Living with vulval lichen sclerosus: A qualitative interview study. Br J Dermatol. 2022 Dec;187(6):909-918. doi: 10.1111/bjd.21777. Epub 2022 Aug 22. PMID: 35831927; PMCID: PMC10087446.

3. Bolognia J., Scha er J.V., Cerroni L. Dermatology. Fourth edition. Elsevier; 2018.

4. Vulvar Lichen Sclerosus. International Society for the Study of Vulvovaginal Disease Patient Information Committee, Revised 2014.

5. Kirtschig G. Lichen Sclerosus-Presentation, Diagnosis and Management. Dtsch Arztebl Int. 2016;113(19):337-343. doi:10.3238/arztebl.2016.0337.

6. www.skinsupport.org.uk/conditions-details/lichen-sclerosusfemales

7. https://mft.nhs.uk/app/uploads/sites/4/2018/04/Using-steroidointment-on-the-vulva-October-2017.pdf

and avoid long, steamy showers. Gently pat skin dry after bathing and apply moisturizer.

• Pay close attention to pre-existing skin conditions. Atopic dermatitis, psoriasis, rosacea, and Raynaud’s Phenomenon can become worse in the winter. If you notice any new or inflamed lesions, frequent swelling, pain or discolouration, prolonged loss of sensation, or unusually itchy skin, consult your family physician or dermatologist.

Richie Jeremian, PhD, is a fourth-year medical student at McGill University in Montreal, Quebec.

THE LEARNING CORNER:
14 | www.canadianskin.ca | Spring 2024

CSPA IN ACTION

Every month of the year brings new learning opportunities for the Canadian Skin Patient Alliance (CSPA) to flourish as a leading advocacy organization. In late November, I participated in a national broadcast with three expert dermatologists on how to raise the standard of care for people with atopic dermatitis and psoriasis. As the first non-physician to be invited and as a woman living with skin conditions, I was grateful to contribute to an engaging dialogue on the importance of early and optimized treatment interventions.

This past January, CSPA took part in a meeting with Indigenous health leaders to discuss how to create a more equitable path from suspicion to diagnosis of cancer. Given that many people face obstacles when trying to access care, it was tremendously eye-opening to help present findings from a collaboration and explore potential opportunities for meaningful actions within the community.

Advocating for best care and treatment options for all skin patients is a major cornerstone of CSPA. In looking to improve the health and quality of life of these individuals, we recently formed an advocacy committee to increase awareness about the physical and psychological effects of dermatological conditions,

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

promote collaborations between patient organizations, patients, and healthcare professionals, and advance public policies around intervention and prevention. CSPA firmly believes that if policymakers had a true understanding of what it feels like to live with a skin condition, they would make decisions that lead to positive outcomes for affected people in Canada. To help patients advocate with greater confidence in the context of their health management, we recently launched Just Diagnosed, the third handbook in our Self-Empowerment Toolkit (https://canadianskin.ca/

SPONSORS OF CANADIAN SKIN MAGAZINE

education/self-empowerment-toolkit) which examines the impact a diagnosis may have on a person’s social and mental well-being, and strategies on how to cope.

Thanks to our loyal supporters and collaborators, CSPA remains a trailblazing force in the dermatology space by bringing about important change for people in Canada living with a skin, hair, or nail condition. Should you wish to learn more about our organization and/or how you can get involved, visit: https://canadianskin.ca.

Rachael Manion, Executive Director, CSPA

These sponsors are not providing editorial support for the magazine. CSPA is responsible for the final content featured in Canadian Skin

CANADIAN SKIN MEDICAL ADVISORS + BOARD MEMBERS + VOLUNTEERS

Thank you to the medical advisors, board members, and volunteers who support the work of CSPA. For an updated list of names, visit canadianskin.ca/about-us.

15 Spring 2024 | www.canadianskin.ca |

New Resource!

The Canadian Skin Patient Alliance (CSPA) is thrilled to introduce its new educational resource, Just Diagnosed! This helpful guide is the third handbook of CSPA’s Self-Empowerment Toolkit It was developed to provide a general understanding of the psychological effects of a skin condition and some strategies on how to cope.

Learn all about…

• Managing your emotions

• Sharing your diagnosis

• Coping with a chronic condition, and more!

For information on CSPA’s educational resources, scan the QR code below, or visit our website at https://canadianskin.ca/education/selfempowerment-toolkit.

www.canadianskin.ca

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