Take control of your GPP

Source: Boehringer Ingelheim

Our long-term partner, company Boehringer Ingelheim has updated and re-released the website GPP&Me just last week. Considering that the website includes many materials with downloadable options, we at EUROPSO thought it would be useful to share with with our psoriasis community. We have tried to put together the highlights from this resource, hoping it would be helpful for you or somebody you care about.

Understanding generalized pustular psoriasis (GPP)

Because GPP is rare, it can take time to find the right doctor. Not all doctors may be familiar with it. And if they recognise it, they still may need to do additional tests to confirm the diagnosis.

Some people may have to see several doctors before GPP is correctly diagnosed. In general, if you have widespread painful, pustules on your skin and have other symptoms like fever, joint pain, and extreme tiredness, you may have GPP.

A dermatologist (skin specialist) is the right doctor to diagnose GPP, but it may take a few visits. A doctor may refer you to another dermatologist who is an expert in GPP.

Once you find the right dermatologist, they may ask about your symptoms, medical history, and any family history of skin disease. They may also need to do blood tests or even look at a small piece of skin under a microscope, called a biopsy, to make the correct diagnosis and decide how best to help you.

Understanding flare triggers may help you manage your disease

A flare is when symptoms appear suddenly

Flares may start with the skin turning red and feeling tender, and then pus-filled blisters (pustules) can appear within hours. The blisters may join together, creating “lakes” of pus. 

Early signs of a flare

Remember how you felt before your last flare? Did your skin turn red and tender with pustules appearing within hours? Did the blisters or pustules combine to form “lakes” of pus? Did you have fever, joint pain, and extreme tiredness?

The next time you feel that way, or the way you felt as a flare occurred, contact your dermatologist right away.

Flares may be unpredictable

Your flares may not always show up the same way and they may appear anywhere on the body. You can’t predict when you may have a flare, or how severe it will be—it can happen any time, last for weeks, and take months to heal. Many patients experience continued symptoms between flares.

Common triggers

Recognising triggers can help manage your disease. Pay attention to how your body feels before a flare. You may have a general feeling of uneasiness, decreased appetite, and nausea before the pustules appear. The most common triggers for GPP flares are:

  • Infection
  • Stress
  • Pregnency
  • Starting or stopping some steroid medicines and pain relievers
  • Withdrawal of steroid treatment
  • Irritating skin creams or ointments
  • Too much sunlight

Helpful tips

If you feel a flare coming on, you may require medical care

Any flare can be serious and may require medical care and, in some cases, lead to hospitalisation. Although rare, complications from a flare can be life-threatening. If you feel a flare coming on, stay calm. Contact your dermatologist when you see or feel the first signs of a flare; they may prescribe a medication. You and your dermatologist may want to discuss the best procedure for ensuring you are seen in a timely fashion when you think you may be having a flare.

Carry information with you that contains your with general practitioner’s and your dermatologist’s contact details

This way, any healthcare provider can check with your dermatologist before treating you. It’s important to get the right treatment as soon as possible for the best results.

Proactively inform all your healthcare providers that you have GPP so they can give you the best care.

Hear from people living with GPP

GPP affects everyone differently. Learn from other people’s experiences with GPP and build your support network.

Visit this link to see other people’s stories and how is their life with GPP.

Featured image: Pixabay.com

Why does my psoriasis seem to get worse in winter

Fall and winter bring shorter days. Shorter days mean less sunlight and Vitamin D. At the same time, colder temperatures mean more clothing layers covering your skin. When combined, these factors might bring the worsening of psoriasis symptoms.

In this period of year, we naturally tend to spend more time in closed spaces and due to the heating, the air in these spaces sometimes gets really dry. On the other side, dry wither air in Europe is not exactly favourable for psoriasis either. In fact, the lack of humidity in the air outside and the dry heat in most buildings during fall and winter can have the same undesired effect on your skin- depriving it of the moisture it needs. If you take this into account and combine it with the fact that your body is in this period usually covered from head to toe and not getting enough ultraviolet light, it becomes understandable why your skin is more likely to flare and your plaques worsen in winter.

Keeping skin soft and moist can minimize itching and tenderness. Over-the-counter moisturizers such as petroleum jelly or thick creams may be recommended. These should be applied immediately after bathing or showering.

The dryness-related psoriasis symptoms could also be relieved with the help of air humidifier in the space where you spend the most of your day, be it an office or your home. However, safely getting the ultraviolet light your skin needs might not be that easy. The UV tanning is definitely not an option for various reasons, among which the risk of getting melanoma takes the highest place.

In the attempt to compensate the sunlight, your doctor might recommend medical use of light rays to treat psoriasis. This is known as phototherapy[i]. This therapy comes in a variety of options, and can be done in a doctor’s office, psoriasis clinic, or even in your home.

The form of light known as ultraviolet light B (UVB) seems to be the most beneficial for treating psoriasis. Depending on your symptoms you might be prescribed a certain amount of UVB exposure. If your doctor does choose this form of light therapy for your psoriasis, ask whether you should consider purchasing a home UVB unit.

Holiday season and psoriasis

Winter is also time for holidays. Some people get psoriatic flares around holidays but, contrary to some beliefs, the key triggers[ii] for symptoms are not food and alcohol. The experts have established that the main reason behind  worsening of symptoms for winter holidays lays in stress. It is known that stress is a psoriasis trigger, and there are people who find the holidays very stressful. In addition to that, heavy drinking, smoking and exchanging viruses at social gatherings may also increase the psoriasis symptoms.

What should I do to help myself then?

We have asked Primarius M.Sc Pij Bogomir Marko, MD from Slovenia for an advice.

„All of the previously mentioned reasons might make your life with psoriasis more difficult in wintertime. My first recommendation is- adhere to your therapy. If you are prescribed a medication for psoriasis, make sure that you are compliant and you take your medicine on time. The other advice is- if you feel stressed out, find something that helps you relax. And finally, even though the wither food is delicious and you don’t feel like exercising, try to follow as healthy a lifestyle as possible. Let that be your Christmas present to yourself. “

About psoriasis

Psoriasis is an immune-mediated disease[iii] that causes raised, red, scaly patches to appear on the skin. It typically affects the outside of the elbows, knees or scalp, though it can appear on any location.

Some people report that psoriasis is itchy, burns and stings. Psoriasis is associated with other serious health conditions, such as diabetes, heart disease and depression.

Between 10 and 30% of people with psoriasis develop arthritis, and it can occur at any time, although it is most likely to appear between the ages of 30 and 50. It is not possible to know who will suffer from psoriatic arthritis, as there are no blood tests to predict it. Psoriatic arthritis is a form of chronic inflammation of the joints characterised by redness, swelling and pain in the affected joints.

In addition, there is a rare form of psoriatic disease, called Generalized Pustular Psoriasis (GPP), which is both physically and genetically different from Plaque Psoriasis. Pustules often cover large areas of the body and typically presents with fever, shivers, intense itching, a rapid pulse, fatigue, headache, nausea, muscle weakness, and joint pain. Flares can also cause life-threatening complications, such as a sudden drop in blood pressure.

[i] American Academy of Dermatology Association, https://www.aad.org/public/diseases/psoriasis/treatment/medications/phototherapy

[ii] WebMD, https://www.webmd.com/skin-problems-and-treatments/psoriasis/7-psoriasis-triggers

[iii] National library of medicine, Psoriasis as an Immune-Mediated and Inflammatory Systemic Disease: From Pathophysiology to Novel Therapeutic Approaches, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8615182/

EUROPSO General Assembly and Members Meeting

This year’s EUROPSO General Assembly and Members Meeting was special, being the first face-to-face event after a two-year pause, due to Covid-19 pandemic. The event took place on Saturday, November 12, when EUROPSO welcomed to Madrid delegates from Greece, France, Slovenia, The Netherlands, Serbia, Czech Republic and Slovakia, and providing a video link for others who could not join in person.

The General Assembly held Board elections. After the election process was completed, Jan Koren, EUROPSO President announced the new Board, consisting of the following members:

  • Jan Koren – President
  • David Trigos Herraez – Vice president
  • Henk Hulshuizen – Secretary
  • Jaime Melancia – Member
  • Tina Koukopoulou – Member
  • Vanda Marjanović – Substitute member
  • Gabriela Doleželová – Substitute member
EUROPSO Board members present at the Madrid meeting, from left to right: David Trigos, Jan Koren, Tina Koukopoulou, Gabriela Doleželová and Henk Hulshuizen

The main topic of the day was the upcoming launch of the EUROPSERVATORY Project’s first phase in May 2023. Explaining all three project phases, David Trigos, EUROPSO Vice President said the overall goal from the project was having „More clinical research, better access to treatment and raised awareness of the psoriatic patients’ needs, until every approved drug finds its way to the patient in need and stigma around this disease ceases to exist. “

Speaking about this overarching goal, Trigos emphasized that it could not be achieved without inviting other interested organisations for an alignment of activities and achieving better impact on the EU policy makers. The members discussed in details about the idea of having a joint initiative for tackling psoriatic disease, which was later on accepted after a short discussion.

The afternoon sessions were dedicated to three workshops:

  1. Fundraising by using the EUROPSERVATORY project
  2. Awareness & Advocacy
  3. How to get younger people more involved in your organisation

After the meeting ended in late afternoon, the members brought a piece of positive atmosphere back to their national organisations, along with valuable new insights and a plan for EUROPSO 2023 activities.

Polka Dot Day celebrated on October 29th 2022

No person suffering from psoriasis or psoriatic arthritis should be left alone with their worries.

This was the reason for the registered association Revenium to organise a Polka Dot Day on the occasion of World Psoriasis Day, October 29, 2022.

„We were delighted that so many people joined us in support of psoriasis patients by wearing polka dot clothes or accessories on this day. By taking action, we are letting our surroundings know that we are familiar with the facts about the disease and that we care about these people“, said the organiser of the event, a nurse and a member of the SPAE patient organization committee, Gabriela Doleželová.

The purpose of this event was to inform the public on the nature of this chronic inflammatory autoimmune disease, which affects the whole organism. It aimed to spread awareness about the disease which shows symptoms on the skin, but also affects nails and joints (psoriatic disease).

It is very important that the public knows that psoriasis is NOT CONTAGIOUS, and that it can be treated, even though it cannot be fully cured at this time.

A special family of polka-dotted toy figures were invented and produced for this day, with purpose of educating children on the subject of psoriasis. These figures are conveying message that psoriatic disease is not contageous and that those who suffer from psoriasis still belong in their group of friends, just like anyone else.

29 October was the day to celebrate Polka Dot Day. On city and village squares, playgrounds and schoolyards, people joined hands and created one BIG HUMAN POLKA DOT – a circle of us, people with polka dots.

„Basically, it´s just about putting on any polka dot clothes on the given day and by doing that, showing that we´re familiar with basic facts about psoriasis,“ said Hana Potměšilová, Chairwoman of the Board of Directors of the non-profit organisation Revenium, Polish member of EUROPSO.

For more information, please visit:

Welcome to our relaunched EUROPSO newsletter

It is our great pleasure to relaunch our newsletter, on this of all days, since today is the World Psoriasis Day 2022.

The aim of this newsletter is to update you on EUROPSO’s work and to share information on key initiatives that our members are working on. In addition, we will share information from our partner organisations that may be of interest to you.

The newsletter will be sent quarterly and we hope that, in time, this would become your preferred way of getting relevant information from the psoriasis community.

Please let us know what you think and if you have anything you would like us to share in future newsletters, do not hesitate to get in touch. 

You can subscribe by clicking this button below.

Uniting for Action – World Psoriasis Day, 29th October

A call to action by IPFA

Ahead of the fast-approaching World Psoriasis Day 2022, EUROPSO is proudly supporting International Federation of Psoriatic Disease Associations’ (IFPA’s) initiative, with this year’s focus on mental health and mental well-being.

Good mental health and mental well-being are increasingly being recognized as essential parts of health. Depression and anxiety are the most common mental disorders worldwide. Both conditions profoundly impact daily life, relationships, and social interactions.

Research has shown that living with psoriatic disease takes a heavy toll on a person´s mental health and emotional well-being. The non-curable, chronic nature of psoriatic disease, the systemic inflammation occurring in the body, and the fact that the disease is visible on the skin renders people living with psoriatic disease at risk of developing depression and anxiety.

A quarter of people living with psoriatic disease experience depression. And as for anxiety, the number jumps to a staggering 48%. The good news is that timely and proper treatment of both psoriatic disease and depression or anxiety can effectively improve the conditions.

We are united and demand action and together we can make a change for the mental health of people living with psoriatic disease.

• Pledge your support for greater access to psoriatic disease care by supporting IFPA’s online petition.

• Lobby a local or national policy-maker to ensure that all people with psoriatic disease have access to the care they need

• Organize a ‘learn about psoriatic disease’ event in schools

• Help people learn about comorbidities related to psoriatic disease by referring them to IFPA’s online resources

• Engage local celebrities or members of the press for your event to generate some excitement and reach a wider audience

• Organize or participate in a local psoriatic disease awareness event. Check out the global map on psoriasisday.org to pin your activity or search for one to attend

• Light up a local landmark, your home or workplace in orange or purple

• Arrange an activity with your work colleagues

The World Psoriasis Day website houses all the elements of the campaign. You can access and download ready-made assets, but we encourage you to craft your own. Be creative. Be exciting. Be relevant. Tools are available in multiple languages. Find everything at psoriasisday.org.

The Psoriatic Association of Slovenia: The 1st congress for psoriatic patients was a great success

Author: Nina Pahor

The Psoriatic Association of Slovenia strives to offer the best to its members and patients with psoriasis.

That is why this year we organised the 1st congress for people with psoriasis, attended by more than 120 patients. The congress was held in a beautiful location on Brdo pri Kranju.

We were joined by top specialists, nurses who are with you in this fight against the disease and accompany you on the path of treatment and improvement. We wanted to provide you with quality and verified information about your illness. The congress was opened by the president of the Society of Psoriatics, Mr. Jan Koren, with an introductory address to all present.

Ms. Nevenka Veboten, a graduate nurse from SB Celje, shared her knowledge and experience with us, who presented us with phototherapy from the side of a nurse. It is impossible to fight psoriasis without local therapy. Mrs. Sandra Bedeković, MD, taught us how to properly apply local therapy and the importance of daily care for skin care. a nurse from the Department of Skin and Venereal Diseases, UKC Maribor.

A healthy lifestyle that includes a healthy diet and physical activity is important for all of us, especially for patients with chronic inflammatory disease. Everything about the guidelines for maintaining a healthy and vital life was presented to us by Mr. asist.dr. Aleš Ambrožič, MD, specialist in internal medicine, specialist of rheumatology from the Clinical Department of Rheumatology, UKC Ljubljana. With the years of knowledge of the disease, the method of treatment also advances. The newest treatment for psoriasis is biological drugs. We were lectured on the goals of psoriasis treatment by prof. Tomaž Lunder, MD, specialist in dermatovenerology from the Dermatological Clinic of the UKC Ljubljana.

Some of you know how psoriasis treatment was done 40 years ago, but many are unaware of how psoriasis treatment has progressed. An insight into the history of psoriasis treatment and progress in treatment was presented to us by Nataša Koser Kolar, MD, specialist in dermatovenerology from SB Celje. Since psoriasis also has associated diseases, we have devoted the topic of the next lecture to one of them. Psoriatic arthritis is an associated disease that occurs in almost 30 percent of people with psoriasis. Katja Perdan Pirkmajer, MD, specialist, lectured us on the importance of treatment and early detection of this disease. of rheumatology from the Clinical Department of Rheumatology, UKC Ljubljana.

Last, but no least important, was the lecture on the psychological side of the disease. The very diagnosis and acceptance of the disease can be a big challenge for both the patient and his family. The burden we get with a diagnosis affects our mental health. And this is exactly what we should devote ourselves to much more. The importance of the psychological side of the disease was presented to us by Ms. Sanja Roškar, MSc in Psychology, Specialist in Clinical Psychology from the Clinic for Internal Medicine, UKC Maribor.

During the break between lectures, we also had a very tasty lunch and stretched our legs around the autumn-colored estate on Brdo pri Kranju. The atmosphere at the congress was very pleasant and we believe that the attendants have acquired some new, important information about the disease and its treatment, which will make patients’ life with it easier.

EUROPSERVATORY Project Launch Announced for May 2023

Jan Koren, President of EUROPSO

Psoriasis has many faces and we need more research to know them all

People with psoriasis often spend the day feeling uncomfortable, embarrassed, itchy and in pain. While lesions may be itchy and painful, there are also psychological effects of psoriasis that can be severe. Other diseases and conditions can be associated with psoriasis and psoriatic arthritis, including diabetes, cardiovascular disease and depression. The latest data even shows that one in two persons with psoriasis has depression. Ahead of this year’s World Psoriasis Day, we talk about the importance of continuous research in this area with Jan Koren, President at EUROPSO European Federation of Psoriasis Associations.

Seemingly, there is already some accumulated knowledge about this disease, so why do you insist on further research in psoriasis?
Yes, there is extensive knowledge on some aspects of psoriatic disease. This knowledge came through research and helped finding different therapy options for people suffering from psoriasis and psoriatic disease. While it seems that we have learned a lot about psoriasis, don’t forget that scientists still do not know what exactly causes this disease. Research is an important piece of the mosaic, without it, we can’t possibly see the whole picture. And what we cannot see, we surely cannot understand or successfully tackle. Having so many different therapies today, comparing to some decades ago seems like a big progress, but the research must continue. Let’s just say that we are not in position to lift our foot from the pedal any time soon.

What is EUROPSO doing on this matter?
As an umbrella organisation, we receive country-specific information through our members from 20 European countries. Although informal and sometimes anecdotal, the information we gathered in previous years made us worry if the number of investigative research projects was decreasing. To be sure about what is the real situation, we initiated, together with EUPATI Spain, a project called EUROPSERVATORY. Just before the pandemic, we started working on this long-term project that will eventually show the complete picture of Psoriasis and Psoriatic Arthritis in Europe. The project is divided in three parts. The first part, dedicated to R&D and Clinical trials is now being finalised and we will soon have a Report, showing the summary of the situation in Europe. I feel privileged to announce the launch of this Report for May 2023. We at EUROPSO are hoping to present the EUROPSERVATORY project findings in the EU Parliament next year, within the European psoriasis week in May 2023.
In addition, this project will implement a service which would offer to our members, psoriasis patients, clinical trials as soon they are approved and included in the EU CT register.
At this point, I feel I also need to express our gratitude to our industry partners, companies BMS, Boehringer Ingelheim and Janssen for their generous support so far, during the first phase of our project.

About Psoriasis and psoriatic arthritis
Psoriasis is an immune-mediated disease that causes raised, red, scaly patches to appear on the skin.
It typically affects the outside of the elbows, knees or scalp, though it can appear on any location. Psoriasis affects at least 15 million people in Europe. It is not contagious.

Psoriatic arthritis (PsA) is a chronic, inflammatory disease of the joints and where tendons and ligaments connect to bone. It can start at any age and some persons develop PsA without ever developing or noticing psoriasis.
There are no special blood tests or tools to diagnose psoriasis. A dermatologist or other healthcare professional usually examines the affected skin and determines if it is psoriasis.
When biopsied, psoriasis skin looks thicker and inflamed when compared to skin with eczema.
Family history plays a big role in psoriatic disease, as about one-third of people with psoriasis have a family member with this disease.

European Psoriasis Week 2022

In 2022, the European Psoriasis Week (EPW) is dedicated to raising general awareness of psoriasis, Psoriatic Arthritis (PsA) and Generalized Pustular Psoriasis (GPP), which is both physically and genetically different from Plaque Psoriasis.

Wishing to support our members in spreading the word about our cause, we have created a toolkit with visuals to be used in social media during the #EPW, from 23rd to 29th May. This toolkit was sent to all EUROPSO members, which is currently 21 organisation from 20 European countries.

Given the limitations of the on-going Covid-19 pandemic, we are very appreciative of our members’ work this year and hope to have even bigger EPW movement in the years to come.

World Psoriasis Day – Czech Republic