For the fourth time, the AMICUS Psoriasis and Psoriasis Foundation invites you to the Day Without Camouflage - a series of free meetings with medical and psychological specialists, which this time will last for six days. The aim of the campaign is to build public awareness of chronic, non-infectious skin diseases and, above all, to encourage patients to 'shed' unnecessary - especially on August days - clothing covering up skin lesions. Psoriasis, atopic dermatitis (AD), chronic spontaneous urticaria (CSU) and HS are chronic diseases that seemingly only affect the skin. However, their impact on the patient's entire body, social, occupational and family functioning is undeniable.
In Poland, approximately 1.2 million people suffer from psoriasis. It is estimated that 80% of cases occur between 20-40 years of age. More than 90% of psoriasis patients feel that the disease worsens or significantly impairs their quality of life. In the case of AD, this is approximately 93% patients. As the results of the report 'Psoriasis. Optimising treatment' prepared by the Amicus Psoriasis and Psoriasis Foundation, during the pandemic, patients found it difficult to access medical care and some discontinued treatment. Another problem is the very high proportion of patients who, despite treatment, see no improvement in their skin condition, and some even experience worsening. One in ten respondents lost their job because of psoriasis.
Psoriasis is a chronic inflammatory disease that can occur at any age, most commonly between 18 and 45 years of age. The disease is characterised by dark red, silvery scaly papules that cluster together to form larger foci. The lesions can also affect the scalp, nail plates and even the intimate area. The occurrence of psoriasis is determined by the interaction of genetic, environmental, immunological and psychosomatic factors. The consequences of systemic inflammation can affect the whole body, causing a range of co-morbidities - psoriatic arthritis, cardiovascular disease, dyslipidaemia, diabetes and, very common among people with inflammatory skin diseases, depression.
- Fear stems from ignorance. Many people still live with the misconception that psoriasis or AD can be contracted. It is no coincidence that August is 'Psoriasis Awareness Month'. Summer is a difficult time for patients. Sun, heat, holidays... and camouflage. Working with people with skin conditions as part of the 'Psychologist for Skin' programme, I have met people with psoriasis, atopic dermatitis and urticaria and HS who have 'locked themselves away' at home, have serious resistance to taking up employment, live in constant fear of the severity of their skin lesions, which translates into every aspect of their families' lives. The pandemic has forced us all to minimise social relationships. This has resulted in more frequent mental disorders, including depression. For people with chronic skin conditions, a similar situation is a daily reality, and the accompanying inflammation significantly worsens the chances of normal functioning. That's why we're organising Camouflage-Free Week - an event that, through education about the disease, encourages people to live without masking themselves and hiding under layers of clothing. Of course, clothing is a symbol. It's also about emboldening patients to step boldly into life, both socially and professionally - without shame, without worrying about other people's reactions to skin lesions - says Dagmara Samselska, president of the AMICUS Foundation for Psoriasis and Lupus, organiser of the No Camouflage Week.
Camouflage - after the Polish language dictionary - is 'the skilful concealment of a true condition' or 'the masking of some object'. Many myths have grown up around psoriasis, as well as other chronic skin diseases, which result in stigmatisation, isolation of patients and withdrawal from professional and social life. On a daily basis, patients adopt the aforementioned camouflage.
Not only psoriasis
Speaking of camouflage, let us not forget other non-infectious, inflammatory diseases - atopic dermatitis, urticaria or Hidradenitis Suppurativa (HS). All of them require an individual approach due to the enormous deterioration in the quality of life of those affected. They also cause stigmatisation and social withdrawal of patients.
Visible lesions on the skin, occupying up to 90% of its surface, scratched open wounds, pain, uncontrollable itching and embarrassment - this is the everyday life of patients with AD.
– Approximately 20% patients who first develop symptoms of AD within the first 2 years of life will have chronic symptoms. A further 17% will show symptoms in the form of periods of remission and exacerbations until the age of 7 years. In approximately 10% patients, AD persists into adulthood. - explains Prof. Dr. Joanna Narbutt, National Consultant in Dermatology and Venereology. - Patients with atopic dermatitis require special holistic care and special attention. It is also necessary to introduce modern treatment methods into therapy in order to control patients' inflammation as effectively as possible and enable them to function properly in society.
– Atopic dermatitis affects almost every area of a patient's life. Sleepless nights due to itching and skin pain, embarrassment about appearance, compounded by social stigma and inability to function normally, mean that the quality of life of patients with AD is severely reduced. As a consequence, depression develops and patients begin to have suicidal thoughts - emphasises Professor Irena Walecka, MD, Head of the Department of Dermatology at the Polish Mother and Child Hospital (CSK MSWiA) in Warsaw Compared to healthy individuals, patients with AD have a 44% higher risk of suicidal thoughts and a 36% higher risk of suicide attempts .
A week without Camouflage - let's meet online
This year's - already the fourth - edition of Camouflage Free Week will take place online due to the epidemiological situation. From 23 to 28 August, a wide range of specialists in dermatology, allergology and psychology will be available for consultation in themed rooms.
- Last year's edition of Day Without Camouflage attracted almost 300 participants. For this year's event, registration will be open until the last minute so that as many people as possible who have difficulty accessing specialists can learn more about their own or a loved one's illness. I believe that, as in past years, the event will bring together a large number of patients - says Dagmara Samselska.
Online workshop with cosmetologist and make-up artist
Women with skin conditions are often sad to give up on make-up or in-office beauty treatments. This does not have to be the case, which is why workshops with a make-up artist and training with an experienced cosmetologist will be offered during meetings with specialists. Participants will learn how to care for sensitive skin (such as the skin of people with psoriasis, AD, high reactivity to external and internal factors, skin changes, damaged hydro-lipid coat), which in-office treatments can be used for which conditions, and will also learn the basics of applying safe make-up. Each of us should have the opportunity to feel special.
Prepare questions for the experts of the No Camouflage Week
This year, in addition to talking to experts via chat during the meeting, attendees will also benefit from the opportunity to ask questions directly by calling the PSOs psoriasis helpline on 530 812 500. From 10.00 a.m. to 6.00 p.m., the number will serve, as before, those seeking support from the PSOs psoriasis helpline (read more about the helpline on www.psos.pl)
This year's event was held under the patronage of the National Consultant for Dermatology and Venereology, Prof. Joanna Narbutt, MD, PhD, and the Consultant for Dermatology and Venereology of the Mazowsze Region, Prof. Irena Walecka, MD, PhD, as well as under the patronage of the Union of Associations of Psoriasis and Psoriasis Patients.
The event is realised thanks to the support of: Janssen-Cilag Polska Sp. z o.o., Eli Lilly Polska Sp. z o.o., Pierre Fabre Dermo-Cosmetique Polska, Novartis Poland Sp. z o.o.
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No Camouflage Week 23-28 August
Live online meetings (experts answer participants' questions)
23 August at 7 pm
Chronic Spontaneous Urticaria (CSU)
Dr n. med. Malgorzata Skibińska
24 August at 7 pm
Selection of biological treatment in psoriasis in view of comorbidities
Prof. Irena Walecka
25 August 8.30 pm
Hidradenitis Suppurativa (HS) - diagnosis and management
Prof. Irena Walecka
26 August at 7 pm
Diet in psoriasis. What's new?
Prof. Agnieszka Owczarczyk-Saczonek
27 August at 7 pm
Atopic dermatitis (AD)
Natalia Zdanowska, MD
28 August 4.30pm
Skin care for psoriasis, selection of cosmetics and treatments
office symptom reduction
Cosmetologist Joanna Wolska
28 August at 6.30 pm
Workshop on safe make-up for skin with psoriasis and AD
Anna Mazurek
Before the live meetings, it is worth watching the online lectures scheduled by the organisers:
23 August at 6.00 pm
Chronic spontaneous urticaria. ABC of the patient
Prof. Joanna Narbutt
24 August at 6 pm
Psoriasis, Psoriasis and COVID-19 - the impact on the patient's psyche
Prof. Ewa Mojs
25 August at 7 pm
Hidradenitis Suppurativa HS. ABC of the patient
Prof. Irena Walecka
26 August at 6 pm
Psoriasis. Patient capacity.
Prof. Joanna Narbutt
27 August at 6 pm
Psoriasis. Head, hands, intimate areas.
Prof. Irena Walecka
REGISTRATION: www.bezkamuflazu.info
Source: press materials of the Amicus Foundation