The World Psoriasis Day has been established by patients for the benefit of the patients. The objective of this day is to draw the world's attention to the problems of over 125 million people who suffer from psoriasis and psoriasis arthritis.
All activities associated with this day are aimed to raise awareness of both patients themselves and the general public. This day also offers the opportunity for initiate discussions among patients and their families, physicians, the media and decision-makers on how to help patients, improve their quality of life, give them the attention they deserve. By raising awareness about the disease and the associated risks, serious co-morbidities and the need for adequate treatment and care, we can counteract ignorance. Elimination of stigmatisation and discrimination associated with psoriasis is also of utmost importance.
What can we learn about patients on the basis of the first World Psoriasis Happiness Report? The report has been compiled by the Danish Happiness Research Institute in cooperation with LEO Innovation Lab, an independent unit of LEO Pharma. The report includes an analysis of the information collected through online surveys form more than 120,000 people - patients with psoriasis, severe, chronic autoimmune disease who live in more than 100 countries.
The report includes the national rankings on happiness among psoriasis patients compared with the national happiness indicators according to the United Nations report of 2017. This has been designed to compare the difference in happiness index between psoriasis patients and the general population. The three lifestyle-related factors psoriasis has affected most are emotional life, physical activity and sexual intimacy come at the top of the list. The survey participants reported that there is low psoriasis-related awareness and understanding among other people, members of their community, and even doctors. The results show that psoriasis patients who feel most alienated believe that doctors do not fully realize the psoriasis' impact on patients' emotional well-being. However the respondents with high happiness index report a high level of trust towards their doctors.
Here are some conclusions from the global survey:
• Almost one in two respondents - 48% feel that their healthcare professionals do not fully understand the impact psoriasis has on their mental well-being
• 42% of the respondents do not believe that their doctors can treat psoriasis successfully.
• More than half – 55.7% – don’t think they have been informed about all the different treatment options related to their psoriasis
• Almost half of the respondents - 49 % think their family members do not understand what it means to live with psoriasis.
• More than half of the respondents - 58 % think their friends and colleagues do not understand what it means to live with psoriasis.
• 74% of respondents believe that public awareness of psoriasis is insufficient
• 40 % feel that they are the only people who suffer from psoriasis in the world.
Participants were examined and categorized according to their illness severity based on their own declarations and measurements of psoriatic lesions on the skin used by physicians worldwide to diagnose psoriasis. The respondents age range was from under 20 years to over 60 years, with the average age of 20-49 years.
According to Dr. Kampka, one of the most important findings of the report which covered over 121 thousand people is the confirmation that psoriasis is of social nature. "The results show that the happiness index depends on the stress involved in relation with normal social life participation. Studies show how psoriasis affects people and their sense of loneliness. On the other hand their well-being is improved in interaction with other, understanding people, regardless whether these people are other psoriasis patients, health care professionals. The report results also prompt us how to help patients. Sometimes small changes introduced in the communication between the doctor and the patient may make a huge improvement in the psoriasis patient's happiness. "
Here are the most popular myths which were discussed and debunked during the first expo for patients with psoriasis AtoPsoriaDerm held in Targi Kielce on 1 July 2017.
Myth 1: "Psoriasis is contagious".
Fact: No! "Psoriasis is not contagious". Unless psoriasis is contagious just like ... freckles!
Myth 2: "Psoriasis is just a skin disease. A cosmetic problem."
Fact: No! Psoriasis is chronic, systemic disease of the immune system that causes the abnormal growth of skin cells. Psoriasis is not only the skin disease, but the whole body condition. While a normal skin cell matures in 28 to 30 days and is shed from the skin's surface unnoticed, a psoriatic skin cell takes only 3 to 4 days to mature and move to the surface. Psoriasis lesions can be painful and itchy, and they can crack and bleed. About 30 – 50% of all people with psoriasis also develop psoriasis arthritis which causes pain, stiffness and swelling in and around the joints. Skin inflammation in psoriasis is just the tip of the iceberg – there is increasing evidence suggesting links with serious health concerns such as cardiovascular disease, diabetes, liver disease, depression and obesity.
Myth 3: "Psoriasis only affects patients physically.”
Fact: No! Aside from the physical burden of the disease, there is also a significant psychological and emotional impact experienced by psoriasis sufferers. People with psoriasis often report feelings of helplessness, hopelessness, anger, frustration and even depression related to the appearance of their skin and how others react to their condition. Some patients with severe psoriasis have even experienced thoughts of suicide. Psoriasis is also the factor curtailing everyday activities such as swimming or going to the gym if it means they will attract stares or negative comments. Psoriasis sufferers often compare the dysfunction and disability of the condition to that experienced by people with other chronic conditions such as diabetes or heart disease.
Myth 4: “Psoriasis is caused by poor hygiene.”
Fact: No! Psoriasis is a disease of the immune system and has nothing to do with poor hygiene. Triggers that can influence the course of psoriasis include infections, stress or worry, hormonal changes, injury to the skin, alcohol, obesity, poor diet, and certain medications.
1 Own study based on https://ifpa-pso.com/wp-content/uploads/2017/01/Borchure-Myths-and-misconceptions-about-psoriasis.pdf
Myth 5: "Psoriasis can be cured"
Fact: We are sorry to say - it is not possible. Psoriasis is a chronic, life-long disease There are therapies leading to better overall management of psoriasis. However, with the proper treatment, psoriasis can be controlled, reduced or even its symptoms can be eliminated. Research into the immune system has led to the development of new biological drugs that target the underlying causes of the condition.
Myth 6: "Psoriasis is easily diagnosed"
Fact: We are sorry to say - it is not possible. Many conditions affecting the skin look alike, for example some early symptoms of psoriasis, such as itching and redness, look the same as eczema or atopic dermatitis This can sometimes make the disease difficult to diagnose. It is important to see a doctor who can do the necessary tests to make a proper diagnosis.
Myth 7: “Psoriasis cannot be inherited.”
Fact: Unfortunately, psoriasis can run in the family; there is a genetic link in approximately 40 – 60% of patients with the condition. Numerous studies point to a genetic predisposition, or inherited tendency, for these patients to develop psoriasis. If one of the parents suffers from psoriasis, the risk of developing psoriasis in a child is 25-30%, if both parents suffer from psoriasis, the risk is likely to grow to 65-70%. Having the genetic predisposition, however, doesn’t necessarily mean that an individual will develop the disease. Other contributing factors, such as injury or infection, may act in conjunction with several genes, or specific patterns of genes, to set in motion the chain of events resulting in psoriasis.
(KK)
