SKINfac
Poison ivy, oak, and sumac rashes
How do you get a rash from poison ivy, oak, or sumac? Every part of these plants, including the roots, contains an oil called urushiol. When this oil touches your skin, it can cause an allergic reaction. Anyone who develops an allergic reaction gets a rash.
This can happen when you:
• Brush up against one of these plants.
• Touch something that has the oil on it, such as your clothing, pet’s fur, or gardening tools.
• Get tiny pieces of these plants on your skin or clothing when someone in the area mows or tugs hard to get rid of them.
What to do?
• Immediately rinse your skin with lukewarm, soapy water.
• Wash your clothing. To avoid getting oil from the plant on your skin, wear gloves while touching your clothes.
• Wash everything that may have the plant’s oil on its surface. Besides clothing, the oil from poison ivy, oak, and sumac can stick to many surfaces, including gardening tools, golf clubs, and pet leashes.
A rash from one of these poisonous plants usually shows up as red, itchy bumps and/or blisters on the skin. In some cases, people develop black spots or streaks of black rather than a red rash.
It takes time for the rash to appear. You may develop one in a few hours if you’ve already experienced a rash from poison ivy, oak or sumac, or in two to three weeks if you’ve never had a rash from any of these plants before.
For many of us, knowledge of hazardous plants like poison ivy is limited to the saying, “leaves of three, leave them be.”
While poison ivy is known to cause contact dermatitis, the following common plants are also capable of producing skin reactions:
• Strawberry
• Garlic
• Tomato
• Comfrey
• Borage
• Rose hips
• Hot peppers
• Tulip, daffodil, and hyacinth bulbs
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Questions about oily skin and cherry angiomas
By Dr. Raed Alhusayen and Dr. Dimitra Bednar
AQHow do I stop my face from being so oily?
Oily skin is caused by excessive sebum production and has multiple influences including skin barrier health and hormonal and genetic factors. Paradoxically, people with oily skin in their teenage or young adult years will be less likely to have dry skin and other signs of aging as they get older. Until then, there are several things you can try to improve the appearance of your skin.
A common cause of oily skin is dehydration, and many people mistakenly think that oily skin does not require moisturizer. The first step is to determine whether your skin is dry or not. This can be accomplished at home by washing your face with lukewarm water and not using any products. If after five minutes you skin feels tight or dry, it is not getting enough moisture, which may be contributing to the oiliness. Alternatively, it may appear shiny and truly oily! The next thing to do is evaluate your skin care routine: consider how many products you apply to your face daily, the types of personal care products, and whether your routine can be simplified. Additionally, many drug and beauty stores sell blotting paper sheets that may be used throughout the day. These are a good on-the-go solution that involves gently patting the skin to absorb excess oil.
Over-the-counter skin treatments that may help manage excessive sebum production include niacinamide, salicylic acid, and retinoids. These ingredients can further dry the skin and make you more prone to sunburn, so it is important to moisturize your skin regularly and to use sunscreen. If your skin is still not getting better and is causing you significant distress or other complications such as acne, see your primary care provider who may offer prescription solutions, investigate for hormonal influences, and/or refer you to a board-certified dermatologist.
AQWhat are cherry angiomas and are they dangerous?
Cherry angiomas are also known as adult-acquired hemangiomas. They are benign (non-cancerous) growths of blood vessels that form a cluster in and below the skin. Cherry angiomas are named for their cherry red color, and are symmetrical, soft, raised bumps that appear commonly on your torso and extremities.
Dermatologists do not completely understand why these lesions occur, yet they are more common in older adults and have a strong genetic component. While adult-acquired hemangiomas do not become skin cancer and are not considered threatening, they may become irritated and bleed depending on their size and location. One potential danger of adult-acquired hemangiomas is that they can mimic more serious skin lesions including melanoma or Kaposi sarcoma. The average adult with a low risk of skin cancer should examine their skin annually with a mirror, including their back and other hard-to-see areas. Remember the ABCDEs of melanoma during your self-exam:
Asymmetry: The lesion is irregular in shape.
Borders: The lesion is not well-defined; you could not trace it with a pencil.
Colours: The presence of two or more colours.
Diameter: Greater than 6 mm.
Evolution or change.
Any suspicious lesion should be photographed using a ruler or a measuring tape. In very rare but serious illnesses, the sudden development of multiple cherry angiomas can be a warning sign. However, you cannot be expected to diagnose your own skin lesions. Your primary care provider should assess any new, persistent skin lesion and consider a referral to a board-certified dermatologist as needed.
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 in Ontario.
Internalized stigma and skin conditions
By Bianca Te and Dr. Valerie C. Doyon
The impact of skin conditions goes far beyond what is seen on the surface, often extending to affect mental health. Unlike most health problems, those impacting the skin have a unique trait: they are on display for others to see. The inability to conceal many skin problems, compounded by society’s beauty standards of clear skin, can lead to stigmatization of those with dermatologic differences. Many people with chronic skin conditions have been made to feel ostracized by their peers, as people often stare or avoid physical contact like handshakes.1
Due to harmful public attitudes, these individuals often develop internalized stigma – where they start accepting negative remarks about themselves as true. This has detrimental effects on their self-esteem, mood, and overall life satisfaction.2,3 Internalized stigma also decreases individuals’ confidence in their ability to make positive changes in their life and begin to feel helpless
towards their own health.3 Shame and embarrassment lead to withdrawal from social support and reduce the likelihood that people consult medical professionals.4 This can create a vicious cycle of worsening skin disease and further pose a barrier to seeking help and achieving effective treatment.
CASE EXAMPLE
Picture Sarah, a 37-year-old businesswoman, mother, and spin enthusiast who has had psoriasis since her teenage years. Throughout her life, she has been the victim of innumerable negative reactions towards her skin, from inappropriate questions to hairdressers refusing to style her hair, even to being asked to leave swimming pools. Together, these instances have chipped away at Sarah’s self-esteem, leading her to avoid social situations. She has passed on career opportunities to continue working remotely, as Zoom meetings hide the psoriasis plaques on the back of
her scalp. Her genital involvement has made the thought of becoming intimate with a new partner after her divorce so distressing that she has refrained from pursuing new relationships altogether.
Internalized stigma has consequences on every aspect of a person’s life and this phenomenon can be represented by the Cumulative Life Course Impairment (CLCI) concept. The CLCI characterizes psoriasis’s impact as an interplay between the physical, psychological, social, ªnd economic burden that a patient experiences over a lifetime.5
THE IMPORTANCE OF SEEKING HELP
As illustrated above, there is a profound connection between the skin and mental well-being. In addition to the physical symptoms (itching, pain, etc.), there is the stigma that is perpetuated by society and subsequent internalization by individuals with such conditions. Addressing the psychological factors of skin disease is as important as treating the skin condition itself.6
“ IT IS IMPORTANT TO RECOGNIZE YOUR PERSONAL STRENGTHS AND POSITIVE QUALITIES BEYOND THE APPEARANCE OF YOUR SKIN.”
1.Identify your strengths –Internalized stigma is fueled by the perception that your skin condition defines your identity and worth. This is far from the truth. To combat these thoughts, it is important to recognize your personal strengths and positive qualities beyond the appearance of your skin.3 Better confidence in one’s own abilities has been associated with better treatment outcomes.7
2.Create a circle of support – Studies show that social support significantly improves mood, life satisfaction, and acceptance of your skin condition.8,9 To help build your own circle, visit the CPSA website for a list of patient support groups and patient organizations specific to your skin condition (www.canadianskin.ca/ about-us/affiliate-members).
3.Seek help from a mental health professional – The psychological distress from skin conditions can often cause more impairment
than the physical manifestations themselves.6 Therefore, an important part of managing skin disease is seeking professional help for the mental health challenges that may be present. Reach out to your primary care provider if you need assistance finding an option that works best for you.
REFERENCES:
1. Pearl, R. L., Wan, M. T., Takeshita, J., & Gelfand, J. M. (2019). Stigmatizing attitudes toward persons with psoriasis among laypersons and medical students. Journal of the American Academy of Dermatology, 80(6), 1556–1563. https://doi. org/10.1016/j.jaad.2018.08.014
2. Alpsoy, E., Polat, M., FettahlıoGlu-Karaman, B., Karadag, A. S., Kartal-Durmazlar, P., YalCın, B., Emre, S., Didar-Balcı, D., Bilgic-Temel, A., Arca, E., Koca, R., Gunduz, K., Borlu, M., Ergun, T., Dogruk-Kacar, S., Cordan-Yazici, A., Dursun, P., BilgiC, O., Gunes-Bilgili, S., Sendur, N., … Senol, Y. (2017). Internalized stigma in psoriasis: A multicenter study. The Journal of dermatology, 44(8), 885–891. https://doi.org/10.1111/1346-8138.13841
3. Drapalski, A. L., Lucksted, A., Perrin, P. B., Aakre, J. M., Brown, C. H., DeForge, B. R., & Boyd, J. E. (2013). A model of internalized stigma and its e ects on people with mental illness. Psychiatric services (Washington, D.C.), 64(3), 264–269. https://doi. org/10.1176/appi.ps.001322012
4. Gray A. J. (2002). Stigma in psychiatry. Journal of the Royal Society of Medicine, 95(2), 72–76. https://doi. org/10.1177/014107680209500205
5. Warren, R. B., Kleyn, C. E., & Gulliver, W. P. (2011). Cumulative life course impairment in psoriasis: patient perception of disease-related impairment throughout the life course. The British journal of dermatology, 164 Suppl 1, 1–14. https:// doi.org/10.1111/j.1365-2133.2011.10280.x
6. Richards, H. L., Fortune, D. G., Gri ths, C. E., & Main, C. J. (2001). The contribution of perceptions of stigmatisation to disability in patients with psoriasis. Journal of psychosomatic research, 50(1), 11–15. https://doi.org/10.1016/s0022-3999(00)0210-5
7. Kim, J. H., & Na, H. (2016). Mediating e ect of self-e cacy in the relationship between internalized stigma and treatment adherence of community dwelling patients with mental illness. Journal of Korean Academy of Psychiatric and Mental Health Nursing, 25 (1), 11-20. https://doi.org/10.12934/ jkpmhn.2016.25.1.11
8. Eicher, L., Knop, M., Aszodi, N., Senner, S., French, L. E., & Wollenberg, A. (2019). A systematic review of factors infl uencing treatment adherence in chronic infl ammatory skin disease – Strategies for optimizing treatment outcome. Journal of the European Academy of Dermatology and Venereology : JEADV, 33 (12), 2253–2263. https://doi. org/10.1111/jdv.15913
9. Janowski, K., Steuden, S., Pietrzak, A., Krasowska, D., Kaczmarek, L., Gradus, I., & Chodorowska, G. (2012). Social support and adaptation to the disease in men and women with psoriasis. Archives of dermatological research, 304 (6), 421–432. https://doi.org/10.1007/s00403-012-1235-3
Bianca Te is a medical student at the University of British Columbia and Dr. Valerie C. Doyon is a dermatology resident at the Université de Montréal.
Close-up on: Alopecia
BY JULIA STERIOPOULOS
Hair loss, known as alopecia, is something many people experience. Androgenetic alopecia – also called male or female pattern baldness –is the most common form of the condition. There are also many rarer types of alopecia, like chemotherapyrelated alopecia and alopecia areata, to name just a few, which are caused by different things. For example, chemotherapy drugs kill fast-growing cells including your hair follicles, while alopecia areata happens when your immune system attacks its own hair follicles. It can be tricky to find the real cause of alopecia, which is why diagnosis may include quite a few steps. First, your doctor will need to look at the areas of hair loss. Where are they located? Are they scarred? Can anything in your medical history explain the condition? Your doctor may also send you for a blood test to look at your hormone, vitamin, and mineral levels. If the doctor can’t get a diagnosis
from this, the next step will be to get a biopsy. A biopsy can be performed as a “punch” biopsy, where a small patch of skin is removed with a precise tool, or as a scrape, where a special razor-like tool scrapes a thin layer of skin off the scalp. These skin samples are examined in a lab to take a microscopic look at what’s going on around your hair follicles. Depending on what type of alopecia you have, treatment can look very different. For androgenetic alopecia, topical foam treatments such as minoxidil, or certain oral or procedural treatments can be prescribed to help regrow hair. For chemotherapy-related alopecia, hair typically regrows after stopping treatment. For alopecias caused by your immune system, your doctor may prescribe topical, injected, or oral anti-inflammatories, or immunomodulators which tell your immune system to stop attacking your hair follicles. Some types of alopecia will come and go on their own, especially
in children, which means that hair will regrow without treatment.
Living with alopecia can be difficult, so seeking emotional support is highly recommended. Your doctor may suggest you consult a therapist to help manage alopecia’s effect(s) on your life. Community organizations like the Canadian Alopecia Areata Foundation (CANAAF) also host support groups and many events throughout the year, where you can connect with others across the country who have the condition and even get involved with volunteering or fundraising.
References
1. Al Aboud, A. M., & Zito, P. M. (2023). Alopecia. In StatPearls. StatPearls Publishing.
2. Canadian alopecia Areata Foundation. Canadian Alopecia Areata Foundation. (2023, December 1). www.canaaf.org
Julia Steriopoulos is a first year MSc student studying pathology and laboratory medicine at the University of Western Ontario.
Ocular melanoma
By Nigel Deacon
Ocular melanoma (OM), also known as uveal melanoma, is a small subset of melanoma affecting about 5% of cases in Canada, with roughly 200 new diagnoses annually.
Originating in the pigment cells of the eye, OM is typically managed through radiation therapy or surgical removal of the affected eye. However, approximately two in five patients will die from uveal melanoma within 20 years post-diagnosis due to metastasis¹ (i.e., secondary malignant growths), leading to a grim prognosis.
Patients are typically diagnosed in their 50s or 60s, with a higher prevalence among individuals with blue eyes and blond hair. Nevertheless, the disease can affect individuals of any demographic. Often, the disease manifests within a mole or freckle in the eye, underscoring the importance of regular eye examinations.
In Canada, four treatment centers are available, necessitating some patients to travel considerable distances for specialized care, with certain provinces lacking financial assistance for these individuals.
A groundbreaking treatment for OM metastasis, tebentafusp (Kimmtrak), gained approval from Health Canada in 2022, subsequently becoming accessible nationwide.
Organizations like the Save Your Skin Foundation (SYSF) and Ocumel Canada support Canadian OM patients by facilitating connections, offering financial aid, and hosting annual symposiums where experts
deliver treatment updates and pertinent information.
Diagnosing OM is complex, often needing thorough eye exams with dilation by an ophthalmologist, as routine tests may not be enough. Regular eye check-ups are vital due to symptom absence. Early detection and intervention preserve vision and reduce metastasis risk. Those with symptoms like floaters, blurry vision, or distortion should seek immediate evaluation.
Numerous clinical trials are now accessible in Canada, with oncologists recommending participation to certain patients, signaling a more optimistic outlook for individuals with OM.
For further information or support, please contact Ocumel Canada and Save Your Skin Foundation via email at info@saveyourskin.ca or by calling their toll-free number at 1-800-460-5832.
References
1. Stålhammar, G., Herrspiegel, C. Long-term relative survival in uveal melanoma: A systematic review and meta-analysis. Commun Med 2, 18 (2022). https://doi.org/10.1038/s43856-022-00082-y
Nigel Deacon is a retired educator and administrator residing in Victoria, BC. He was diagnosed with primary ocular melanoma in 2010, followed by metastasis in 2012. In 2019, he founded Ocumel Canada under the auspices of Save Your Skin Foundation to advocate for, and support, ocular melanoma patients across Canada.
skin infections Fungal
BY SIDDHARTHA SOOD
Fungal skin infections are very widespread and affect approximately 20–25% of the population worldwide. They are even more common in immunocompromised individuals.1,2 The two main types of microscopic fungi that can infect your skin are candida and dermatophytes. The former is often referred to as “candidiasis” whereas the latter will cause types of infections known as “tinea.” 1,3
RISK FACTORS
Although there are several types of fungal infections, the risk factors for developing them often overlap and include2,4:
• Being immunocompromised
• Receiving corticosteroids, medications
• Excessive moisture due to environment, sport, or health conditions (e.g., hyperhidrosis)
• Poor hygiene
• Wearing tight, ill-fitting clothes Generally, these infections spread through direct and indirect contact such as shared towels, bedding, and clothes. The use of unsterilized combs, scissors, or razors is another method of transmission.4
TINEA CAPITIS
When fungal infections affect your scalp, it is commonly known as tinea capitis. This will show as scaly patches on the scalp with or without hair loss, which may occur shortly after a haircut. Use of oral antifungals usually clears the infection.5
ORAL CANDIDIASIS
Oral candidiasis, also known as thrush, is a candidal infection of your mouth that is most often seen on the tongue. However, in severe cases, it can affect the roof of the mouth or the esophagus, causing difficulties with swallowing. The use of an antifungal rinse known as nystatin or an oral antifungal agent such as fluconazole are among treatment options.6
TINEA CORPORIS
Tinea corporis refers to a tinea infection of the general body. It is typically what you think of when you hear “ringworm” –it will appear as a scaly, patch of skin with inner clearing and well-defined borders. There may be associated pustules or raised spots (“papules”) on the borders.
This infection is very contagious with contact. Nonetheless, it often responds well to topical antifungal medications. However, if it is extensive, your doctor may prescribe an antifungal pill.5
TINEA
MANUUM
Tinea manuum, an infection of the hands, can present similarly to a ringworm rash. Alternatively, it can show up as generalized dryness and scaling commonly on one hand and on two feet. Treatment is similar to tinea corporis.5
INTERTRIGINOUS CANDIDIASIS
Intertriginous refers to the distribution of the fungal infection, which affects the skin folds. It is typically a red patch of skin with well-defined borders. This infection can be very painful and may have an associated foul smell. Usually, a barrier cream such as zinc oxide and a topical antifungal agent is used to treat the rash.6
TINEA CRURIS
Tinea cruris is referred to as “jock itch.” It presents with a deeply red (in lighter skin types) or grayish-brown (in darker skin types), scaly rash with or without a “ringworm” appearance in the groin folds next to the genitals.5
TINEA VERSICOLOR
(also known as pityriasis versicolor)
Tinea versicolor will typically appear on the chest, shoulders, and/or back as lightly coloured (“hypopigmented”) spots. Although this can be confused as vitiligo, this is a fungal infection that often clears when ketoconazole shampoo is applied to the affected areas.5
TINEA PEDIS
“Athlete’s foot” is the common name for tinea pedis. This fungal infection can lead to either peeling or cracking between the toes, generalized cracking of the skin on the foot, or an outbreak of fluid-filled blisters on the bottom surface. It can often be malodorous and cause irritation that limits physical activity. Participation in sports, excessive sweating, and improper foot hygiene are risk factors. Alongside conventional anti-fungal treatment, additional recommendations are to replace socks
and shoes as often as possible and to limit accumulation of moisture.5,7
ONYCHOMYCOSIS (tinea unguuium)
Onychomycosis is a common fungal infection of the nails, usually of the toenails. It can present with dark or white-yellow discolouration on the nail plate or as destruction of the nail itself in late stages. An alternative to oral antifungals, efinaconazole is an effective treatment which is applied daily on the nail, similar to nail polish.8
TREATMENT
Treatment for fungal skin infections commonly includes topical creams or lotions as well as oral medications. In certain cases, mouth rinses or shampoos can be used. Before administering treatment, your doctor may take scrapings of the affected areas to confirm a diagnosis. If you are taking oral antifungal medications for more than three weeks, you may be required to have routine bloodwork for monitoring. 5
While fungal skin infections are common, highly contagious, and often distressing, they can be managed with a visit to your family doctor and/or dermatologist for an accurate diagnosis and timely treatment.
REFERENCES:
1. Havlickova B., Czaika V.A., Friedrich M. Epidemiological trends in skin mycoses worldwide [published correction appears in Mycoses. 2009 Jan;52(1):95]. Mycoses. 2008;51 Suppl 4:2-15. doi:10.1111/j.1439-0507.2008.01606.x
2. Yeung J., Bunce P.E., Lynde C.W., Turchin I., Vender R.B. Review and Practical Guidance on Managing Fungal Infections in Patients With Psoriasis Receiving Anti-IL-17 Therapies. J Cutan Med Surg 2022;26(1_suppl):3S-23S. doi:10.1177/12034754221111111
3. Deng R., Wang X., Li R. Dermatophyte infection: From fungal pathogenicity to host immune responses. Front Immunol 2023;14:1285887. Published 2023 Nov 2. doi:10.3389/ fimmu.2023.1285887
4. Gupta A.K., Chaudhry M., Elewski B. Tinea corporis, tinea cruris, tinea nigra, and piedra. Dermatol Clin. 2003;21(3):395-v. doi:10.1016/s0733-8635(03)00031-7
5. Ely J.W., Rosenfeld S., Seabury Stone M. Diagnosis and management of tinea infections. Am Fam Physician 2014;90(10):702-710
6. R. AN, Rafiq N.B. Candidiasis. In: StatPearls Treasure Island (FL): StatPearls Publishing; May 29, 2023
7. Leung A.K., Barankin B., Lam J.M., Leong K.F., Hon K.L. Tinea pedis: An updated review. Drugs Context. 2023;12:2023-5-1. Published 2023 Jun 29. doi:10.7573/dic.2023-5-1
8. Gupta A.K., Talukder M. Efinaconazole in Onychomycosis. Am J Clin Dermatol. 2022;23(2):207-218. doi:10.1007/s40257021-00660-1
Siddhartha Sood is a third-year medical student at the University of Toronto in Ontario.
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.
Help us help hers
Become a monthly donor today, at https://canadianskin.ca/getinvolved/donate.
TIPS FOR HEALTHIER SKIN
Bug bites 101
By Victoria Young
Whether travelling, camping, or enjoying a BBQ outside, bug bites can be difficult to avoid, and often result in itchiness, redness, pain, and irritation. These symptoms stem from the injection of saliva and sometimes venom during a bite. An insect’s saliva often contains irritating or toxic materials. Immediate action is key to alleviating discomfort and reducing the risk of infection.
Bug bites can trigger local or systemic reactions (typically anaphylaxis), with local reactions being the most common. To treat local reactions, begin by cleansing the area with mild soap and water to remove any remaining venom, dirt, or bacteria. Apply a cold compress for 10 to 15 minutes to reduce swelling.
Over-the-counter remedies such as ibuprofen and acetaminophen can be used for painful bites, as well as antiitch creams containing hydrocortisone, calamine, or menthol. If the itching persists, over-the-counter oral antihistamine can be taken. Although tempting, avoid scratching, as this can worsen the irritation increasing the risk of infection. It is also important to monitor for signs of infection, such as increased redness, swelling, warmth, or pus. Systemic reactions may manifest with a tingling sensation (often in the face), flushing, swelling, and hives. If an anaphylactic reaction occurs, seek medical attention immediately.
While bug bites can be bothersome, quick action can drastically improve
the discomfort. Prevention is the best way to avoid needing treatment. Applying insect repellent that contains 20 to 30% DEET, wearing appropriate clothing, and using bed nets are all great strategies to ward off bug bites.
References
1. Allington, Herman V. “Insect Bites.” Journal of the American Medical Association, vol. 155, no. 3, 15 May 1954, p. 240, doi:10.1001/jama.1954.03690210018005.
2. Barsky, Howard E. “Stinging insect allergy.” Postgraduate Medicine, vol. 82, no. 3, Sept. 1987, pp. 157–162, https://doi.org/1 0.1080/00325481.1987.11699959.
3. “Mosquito Bite Symptoms and Treatment.” Centers for Disease Control and Prevention, 24 May 2023, www.cdc.gov/ mosquitoes/mosquito-bites/symptoms.html. Accessed 24 Mar. 2024.
Victoria Young is a second-year medical student at the University of Toronto in Ontario.
While bug bites can be bothersome, quick action can drastically improve the discomfort. Prevention is the best way to avoid needing treatment.
By Maddy McCarville
Questions to ask when considering participation in a clinical trial
Clinical trials are crucial for the overall advancement of medical research, but more specifically for the opportunity to evaluate new medications and therapies for people impacted by different health conditions. As a result, clinical trials require volunteers as research participants, which at times can be an overwhelming and intimidating process to which individuals commit their time and energy.
In order to make the best decision for your personal well-being, you should begin by sharing your intentions to participate in a clinical trial with your doctor or a healthcare professional. Additionally, it is important that you understand the full requirements of the clinical trial and feel knowledgeable and comfortable about the process. You are encouraged to ask the members of the study team about the trial and the treatment you will receive throughout your participation. Here are a few simple questions to get you started and help determine if you are the right fit:
• What is the purpose of the clinical trial?
• How long will the trial last?
• Does the trial involve a placebo or a treatment that is already on the market?
Keep in mind that no question is “bad” or “wrong.” The research team is available to address all your inquiries and/or concerns so that you will have the information you need to be adequately informed as a potential participant. You can also follow up
with additional questions to learn more about how the trial may impact your daily life:
• Will hospitalization be required?
• What kind of tests and/or treatments are involved?
• How do the possible risks and benefits of the study compare to my current treatment plan?
• Who will oversee my care? Lastly, you may want to inquire about trial sponsors, reimbursement
for expenses, and privacy and confidentiality policies to gain a complete overview of the study.
For more information on clinical trials, visit: https://canadianskin.ca/research/ clinical-trials. To find trials in your province or territory of residence, visit: https://trial-finder.ctontario.ca.
Maddy McCarville, MPH, is a health communications professional in London, Ontario.
Gorlin Syndrome
By Mimma Spagnolo
As someone living with Gorlin Syndrome, my journey has been a unique and challenging one. Gorlin Syndrome, also known as basal cell nevus syndrome, is a rare genetic condition that affects multiple systems in the body and is primarily characterized by a predisposition to develop various types of tumors, particularly basal cell carcinomas.
From a young age, I began to notice unusual signs: pits on the palms of my hands and on the soles of my feet. Skin lesions started appearing everywhere on my body, which were later diagnosed as basal cell carcinomas. These growths can be disfiguring and require constant monitoring and treatment. Living with these visible
I’ve learned to adapt and find strength in my resilience. Support from loved ones and connecting with others who share similar experiences has been invaluable in navigating this journey.
reminders of my condition has been emotionally taxing, to say the least.
Aside from the physical manifestations, Gorlin Syndrome also presents other challenges. Dental abnormalities, such as cysts in the jaw, are common. I’ve undergone multiple surgeries and dental procedures to have them removed. There are many other symptoms which I fortunately do not have.
Perhaps one of the most frustrating aspects of Gorlin Syndrome is its unpredictability. Despite vigilant monitoring and preventative measures (I’ve become an expert on sunscreens), tumors can still develop anywhere on the body, the latest in my ear canals. These necessitate frequent medical interventions. The constant uncertainty about my health can be mentally exhausting, leading to feelings of anxiety and fear about the future.
However, despite these challenges, I refuse to let Gorlin Syndrome define me. One of the positive impacts of all that sunscreen is that I have no wrinkles or sun damage on my face. I’ve participated in clinical trials, with the hope that something will be found soon to alleviate some of the symptoms. I’ve learned to adapt and find strength in my resilience. Support from loved ones and connecting with others who share similar experiences has been invaluable in navigating this journey.
Living with Gorlin Syndrome is not easy, but it has taught me resilience, empathy, and the importance of cherishing each day. While the road ahead may be uncertain, I remain determined to live my life to the fullest, covered with sunscreen from my head to my toes, embracing both the highs and lows that come with this rare condition.
Living with Gorlin Syndrome is not easy, but it has taught me resilience, empathy, and the importance of cherishing each day. While the road ahead may be uncertain, I remain determined to live my life to the fullest, covered with sunscreen from my head to my toes, embracing both the highs and lows that come with this rare condition.
FOCUS Pachyonychia congenita
By Dr. Catherine C. McCuaig
Pachyonychia congenita (PC) is a genetic disorder with mutations affecting one of five keratins (proteins) that form your hair, nails, and other hard tissues. The name stems from the Greek terms “pachy” (thick), “nychia” (nails), and “congenita” (existing from birth). Pachyonychia congenita arises as a spontaneous mutation or is an inherited condition from one of your parents. A blood test can help confirm which mutation is responsible for the disorder. While symptoms of pachyonychia congenita can vary, they often appear
shortly after birth and are usually present before the age of 10 years old. Most nails become thickened. Often, painful calluses and blisters develop on the soles of your feet and can make walking difficult. Additionally, the palms of your hands can display thickening of the skin and –along with the soles of your feet – may be very sweaty.
People with PC may have teeth already present at birth, skin lesions or cysts on their elbows and knees (especially in children), and a white film on the lining of their mouth
and tongue. Rare symptoms include feeding difficulties, hoarseness, sores at the sides of the lips, bacterial skin infections, and hair loss.
At present, there is no specific treatment available for PC. The use of moisturizers can help improve rough skin patches, calluses can be trimmed, and oral and topical medications prescribed by a healthcare professional may help relieve other symptoms.
Dr. Catherine C. McCuaig is a pediatric dermatologist at the CHU Sainte Justine in Montreal, Quebec.
An overview on ectodermal dysplasia syndromes
By Meghan Cross
Rare Diseases
Jacob was 14 months old when he was diagnosed with ectodermal dysplasia. His skin was bright red and peeled in layers, leaving big raw patches. His eyes were red-rimmed, and he had very fine eyelashes. He was bald without eyebrows, his skin was hot, dry, and itchy – and he cried without tears. When his dental x-rays showed little to no tooth development, genetic testing was done to confirm his diagnosis.
Ectodermal dysplasias are inherited disorders that result in abnormal development in utero of the skin, hair, teeth, nails, and glands together or in combination. There are over 180 identified known types which are identified by the combination of symptoms a person may have. While symptoms and severity vary, there are key characteristics that aid in each individual diagnosis:
Hair
Hair is sparse on the scalp and body, is usually light in colour, brittle, and is slow to grow. Eyebrows and eyelashes can be sparse or missing altogether.
Nails
Finger and toenails can be thick or thin, abnormally shaped, or discoloured.
Skin & sweat glands
Skin may be prone to eczema, rashes, and infections, which can be quite severe. It can also be thin and dry. Sweat glands may not have developed or may be limited, which results in little to no sweating. This means overheating from weather, illness, or sports, etc., can be life-threatening.
Teeth
Teeth may be missing (hypodontia) or misshapen (pegged or pointed) and widely spaced with poorly formed enamel.
Ectodermal dysplasia characteristics can also include cleft lip and palate, reduced saliva and thick mucus, damaged tear ducts, allergies and asthma, growth issues, a missing frenulum, and missing or fused toes and fingers among many other symptoms.
With the right dental and health care support and some unique management strategies, people living with ectodermal dysplasia, like Jacob, can live long, healthy, and vibrant lives.
Meghan Cross is the founder of the Canadian Ectodermal Dysplasia Syndromes Association (CEDSA), a registered charity dedicated to providing information, resources and support to individuals and families in Canada living with ectodermal dysplasia. For more information, visit www.ectodermaldysplasia.ca.
CSPA IN ACTION
I had the pleasure of attending and being a panelist at the Inaugural Canadian Genodermatoses Network Meeting held on April 5, 2024 at Toronto’s SickKids Hospital. It covered a wide range of topics crucial for understanding and addressing rare genetic skin disorders. Here’s a summary of the key discussions and takeaways:
1. Importance for parents/families: Five patient voices shared their experiences and emphasized the importance of understanding the needs and perspectives of parents and patients dealing with genodermatoses, highlighting the necessity for support and resources.
2. Lessons from France’s rare disease network: Insights and experiences from France’s rare disease network, shedding light on effective strategies for collaboration, patient advocacy, and resource allocation.
3. Funding, organization, and priority setting: Lessons learned from SkIN Canada regarding funding mechanisms and prioritization strategies in the context of rare skin diseases.
A spotlight on our latest activities, events and other information of importance to skin patients in Canada
4. CADTH and rare disease priorities: Discussed the role of CADTH (Canadian Agency for Drugs and Technologies in Health) in identifying and addressing rare disease priorities, focusing on areas such as improving infrastructures to gather quality data on the prevalence of rare diseases.
5. Canadian regulatory priorities: Examined regulatory priorities specific to rare diseases in Canada, highlighting the need for streamlined processes and incentives to facilitate the development and approval of treatments.
6. Research in rare diseases: Explored perspectives from both industry and scientific communities on research priorities, including innovative approaches such as gene therapy, which holds promise for addressing conditions caused by single-gene mutations.
7. Gene therapy: Delved into the journey from conceptualization to realization of gene therapy, showcasing its potential to revolutionize treatment for genodermatoses and other monogenic disorders.
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8. Small group discussions: Participants took part in discussions aimed at improving patient care. They identified future priorities in key areas such as diagnosis, care management, research, education, and advocacy. Overall, the meeting provided a comprehensive platform for stakeholders to exchange knowledge, share experiences, and collaborate towards advancing care and support for individuals affected by genodermatoses. Thank you to Dr. Elena Pope, Dr. Michelle Ramien, Dr. Wingfield Rehmus, and Dr. Irene Lara Corrales for such a great and informative day. To learn more about the many ways that CSPA supports patients and their families and/or how you can get involved, visit our website at https:// canadianskin.ca.
Mimma
Spagnolo, Co-Chair, CSPA Board of Directors
DID YOU KNOW?
CSPA supports awareness days for a variety of skin conditions, like World Vitiligo Day on June 25.
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.
Tanny Nadon Caregiver Award
CSPA is proud to honour Yvonne Gerard (North Vancouver, BC) with the Tanny Nadon Caregiver Award. Yvonne has gone above and beyond in supporting her husband Bob, a melanoma and brain cancer survivor.
After Bob’s devastating diagnoses, Yvonne became immersed in both her role as a caregiver and in her quest to find an effective treatment. Yvonne’s efforts not only saved Bob’s life, but they also led her to become an advocate for others struggling with skin cancer.
Meet this couple as they tell their story in the CSPA video, Spotlight: Yvonne’s Story, on CSPA’s YouTube channel: https://bit.ly/Spotlight-caregiver-stories.
Call for nominations
Do you know someone who deserves special thanks for the care they provide to someone impacted by skin, hair, or nail condition? Nominate them for the Tanny Nadon Caregiver Award.
We choose a recipient based on their:
• Dedication to providing assistance
• Compassion and strength
• Problem-solving techniques
• Self-education about the condition
• Use of services to help manage the condition
The honoree receives an embroidered blanket, a certificate, and a SPOTLIGHT profile on CSPA’s media channels.
Nominations accepted annually with a mid-October deadline.
Visit the CSPA website to learn how you can nominate a caregiver, view Yvonne’s SPOTLIGHT video, and learn about the legacy of Tanny Nadon: www.canadianskin.ca/get-involved/patients-and-caregivers/ tanny-nadon-caregiver-award.
Tanny Nadon
CSPA honours the memory and example of the dedicated and selfless volunteer, Tanny Nadon (1941–2016), by recognizing a caregiver with this award.
