Our family’s fight against a mysterious skin disease- my father’s GPP story

Author: Tina Kasap

Going through a rare disease as an individual, and as a family, is a uniquely challenging experience. This is especially true for rare skin diseases, which tend to be taken less seriously and labelled as ‘cosmetic’ issues. I wanted to open up about my family’s journey with Generalized Pustular Psoriasis (GPP), which ultimately took my father from us. It’s been a tough journey filled with confusion, frustration, and a sense of isolation that comes with dealing with such a rare and poorly understood condition.

For over a decade, we watched as my father struggled with a mysterious skin disease. It took over 10 years and several incorrect diagnoses, countless tests, countless hospitalisations and countless ineffective, and at times harmful, treatments to arrive to the GPP diagnosis. The worst part? Even after we had a name for it, the healthcare professionals in charge of his care did not know how to tackle this rare condition, leaving us feeling helpless and alone.

Living through this ordeal was incredibly tough, especially as a family member watching your loved one suffer. We felt like we were on our own because GPP is so rare. It’s hard to describe the sense of isolation that comes with knowing that very few people understand what you’re going through. Losing my parent to GPP has left an unfillable void in my life. But I’m sharing our story in the hope that it will shed light on the challenges of rare diseases like GPP and the critical need for more awareness and support.

Five years after losing my father, I had an unexpected opportunity to engage with the GPP community through my work. A whole new world opened up for me, and I was able to meet other patients and their families, as well as healthcare professionals and advocacy organisations working tirelessly to improve the lives of GPP patients. I finally felt like I was not alone anymore. To anyone out there who’s dealing with GPP or supporting a loved one through it, please know that you are not alone either. Reach out to organizations like EUROPSO—they can connect you with a community that understands. Together, let’s continue advocating for those affected by Generalized Pustular Psoriasis.

Photo by Brittani Burns on Unsplash

The EUROPSO podcast series focused on the Epicensus programme

At the beginning of this year, EUROPSO produced four podcast episodes shedding light on different calls to action from the Epicensus programme, from three perspectives: patients, patient advocates, and medical professionals.

All four episodes are now available for streaming on Spotify and EUROPSO’s YouTube channel.

Despite many improvements in treating and managing psoriasis patients, significant needs still remain unmet. The Epicensus programme brought together three important groups of people: dermatologists, payors, and patient representatives, such as EUROPSO, with a focus on improving the standard of care.

The Epicensus programme achieved consensus across different psoriasis stakeholder groups on the essential changes needed to elevate the standards of care for psoriasis patients across Europe. Collective action is now needed to implement these changes. EUROPSO was proudly represented in this project by Jan Koren, our president.

We partnered with UCB Pharma to challenge the status quo in psoriasis care through the European-wide ‘Epicensus’ programme.

The production of these episodes was financially supported by UCB Biopharma.

To access individual podcast episodes, please click on their title below:

Episode 1: More than skin deep

Episode 2: Education for all

Episode 3: All in this together

Episode 4: Access all areas

European Psoriasis Week 2024: Request for Complete Access to Treatment Across Europe

The European Psoriasis Week, scheduled for the last week of May, starting from May 27, is getting ready to inspire conversations and drive action towards ensuring complete access to treatment for individuals living with psoriasis across Europe. With a targeted focus on people aged 25-45, this year’s campaign aims to leverage the power of social media platforms like Instagram and TikTok to raise awareness and advocate for improved access to psoriasis treatment.

Based on available data provided by IFPA, there are estimated 6 million people in Europe living with psoriasis. Psoriasis, a chronic autoimmune condition that affects millions worldwide, poses significant challenges for those living with it. From the physical discomfort of skin lesions to the psychological toll of stigma and discrimination, the impact of psoriasis can be profound. However, access to effective treatment can make a world of difference, offering relief and improving quality of life for those affected.

The European Psoriasis Week 2024 campaign carries a simple yet powerful message: “Complete Access to Treatment Across Europe. Let’s talk about psoriasis in Europe.” Through engaging content and thought-provoking discussions, the campaign seeks to highlight the importance of ensuring that all individuals have access to the treatment and support they need to manage their condition effectively.

“We believe that every person living with psoriasis in Europe deserves access to comprehensive treatment options,” said Jan Koren, EUROPSO President. “By coming together during European Psoriasis Week, we can amplify our voices and drive meaningful change towards a future with healthier skin and a better quality of life.”

To join the conversation and show your support for complete access to psoriasis treatment across Europe, use the following hashtags on social media: #complete_access_4_all #let’s_talk_about_access #let’s_talk_about_pso #let’s_talk_about_treatment

For more information about psoriasis and the importance of access to treatment, visit Euro-Pso.

Media Contacts

Jelena Misita, Patient Advocacy Consultant at EUROPSO Email: jelena.misita@euro-pso.orgManel Casielles, Communication Officer Email: secretariat@euro-pso.org  

About European Psoriasis Week

European Psoriasis Week is an annual campaign dedicated to raising awareness about psoriasis and advocating for improved access to treatment and support for individuals living with the condition across Europe. By fostering dialogue and collaboration among stakeholders, European Psoriasis Week aims to drive positive change and enhance the quality of life for those affected by psoriasis.

Unveiling Psoriasis: A Double Perspective

EUROPSO Podcast Episode 2

With a blend of personal narratives and professional insights, second episode of Europso Podcast offers a comprehensive exploration of psoriasis from a female perspective, shedding light on the challenges, triumphs, and collaborative efforts in managing this chronic condition.

In this episode supported by Almirall, Europso continues to explore deep into the world of psoriasis from two unique perspectives. Hosted by patient advocate Jelena Misita, guests Tina Koukopoulou, a psoriasis patient, and Dr Martina Burlando, a healthcare professional, share their insights into the challenges and triumphs faced by women with psoriasis.

Tina, a patient advocate from Greece, shares her journey with psoriasis since adolescence, while Dr Burlando, a specialist from Italy, sheds light on her expertise in managing chronic skin conditions.

Tina discusses the evolving impact of psoriasis on her life, from initial diagnosis to managing symptoms and societal stigma. She shares personal experiences of familial support, coping strategies, and the complexities of living with visible skin lesions, particularly as a woman in a society where image matters.

Dr Burlando emphasizes the holistic approach to psoriasis management, considering both physical and emotional well-being. She highlights the importance of patient-provider collaboration, tailored treatment plans, and addressing concerns around family planning and therapy side effects.

The discussion underscores the significance of open communication between patients and healthcare professionals in navigating treatment decisions, managing fears, and optimizing outcomes. Dr Burlando stresses the role of empathy, personalized care, and ongoing support in empowering patients on their psoriasis journey.

The episode concludes with a reminder that while living with psoriasis presents unique challenges, with support, understanding, and proper guidance, it’s a journey that can be managed. Good communication fosters strong patient-provider relationships, paving the way for better treatment outcomes and improved quality of life.

Listeners are encouraged to subscribe to the Europso YouTube channel for more enlightening discussions on managing skin conditions. With Almirall’s support, the podcast aims to provide innovative solutions and improve the lives of those affected by psoriasis.

For listening this episode, please follow this link.

EUROPSO just launched its first podcast episode

Beyond the surface: Assessing the wellbeing of psoriatic patients

We’re excited to introduce our EUROPSO debut podcast episode titled “Beyond the Surface: Assessing the Wellbeing of Psoriatic Patients.” Dive into a 32-minute journey, supported by Almirall Pharma, as we explore the lives of individuals affected by psoriasis. Join host Jelena Misita and special guests for an insightful conversation.

In this newly released episode, we explore the core concerns of psoriatic patients and how their wellbeing is assessed. Our esteemed guests, Dr Alvaro Gonzalez Cantero, a dermatologist, and Antonio Manfredi, a patient and journalist, shed light on the true meaning of patient wellbeing for those living with psoriasis.

Tune in now to discover why Antonio emphasizes the importance of self-care and why Dr. Alvaro is hopeful about the available treatment options for psoriasis.

Listen to this episode on Spotify, Google Podcasts, and the App Store for easy access. Click here to start listening.

EUROPSO’s 35th Anniversary Celebration and Members Meeting: A Milestone in Psoriatic Disease Advocacy

On the eve of November 25th in Brussels, EUROPSO hosted a celebratory dinner, setting the stage for the Members Meeting that followed on the 26th. The occasion marked the organization’s 35th anniversary and brought together members and esteemed guests.

Opening the Members meeting on November 26th, the President, Jan Koren, said: “Over the past three and a half decades, EUROPSO has evolved into a dynamic coalition, with 21 organizations from 20 countries. Your engagement has been instrumental in our growth. Our collective commitment remains unchanged—to advance the prevention, treatment, and research of psoriatic diseases. Through education, we aim to enhance understanding not only within the medical community but also in the broader public sphere.”

The EUROPSO Members Meeting 2023 and 35th Anniversary Celebration are pivotal moments in the organization’s history. President Jan Koren’s address and the comprehensive agenda of the Members Meeting reflect EUROPSO’s dedication to advancing the cause of psoriatic disease advocacy.

“As we look back on our achievements and forward to the future, EUROPSO remains committed to making a lasting impact on the lives of those affected by psoriatic diseases. Here’s to another 35 years of making a difference,” said Koren after expressing gratitude to all the members, volunteers, and corporate partners for their continued support.

Highlights from the Members Meeting

  1. European Psoriasis Week 2024 Ideas were collected towards having a unified voice/message related to equal access to treatment. The goal is to link it somehow to comorbidities, making a causality case between psoriasis and three comorbidities that Healthier Together is focused on (CV, MH, and T2D). The aim is to collect evidence that interlinks these diseases and incorporate it into messaging.
  2. More than a scratch – EU initiative Considering the upcoming EU elections as a potential obstacle, the plan is to build a relationship with staff from permanent representation offices. Emphasis is on continuity and relationship building before moving forward, but also being able to move forward in the first place.
  3. The official launch of the website www.PSOdata.eu The website is now live and public, but not all features will be publicly available. Reports will be generated monthly and stored on the website.
  4. GPP Workshop The plenary discussion sparked ideas about how to initiate the Pilot project. Members discussed three options that could potentially bring patients and medical experts closer in GPP. The final approach and milestones will be defined in early spring 2024, with hopes to kick off the Pilot by the end of 2024.

Members Meeting Agenda

The Members Meeting on November 26th featured a comprehensive agenda, reflecting EUROPSO’s commitment to advancing its mission. The agenda included:

  • Registration and Gathering
  • President’s Speech on the 35th EUROPSO Anniversary and Future Plans (Jan Koren)
  • EU Initiative: Committee of Regions May Meeting and Further Steps Report (David Trigos)
  • Working Dinner with MEPs Update and EUROPSO’s Further Political Agenda (Jaime Melancia)
  • EUROPSO Projects 2024 (Jelena Misita)
  • EPW and WPD 2024 Campaigning (Tina Koukopoulou)
  • Plenary Discussion and Q&A (All Members)
  • Connecting Psoriasis Clinical Centres of Excellence with Patient Organisations for the Benefit of GPP Patients: 2nd Workshop in 2024 (Jelena Misita, David Trigos)
  • Presenting the Report from the 1st Workshop Held in April 2023
  • Choosing the Pilot Project Idea and Concept
  • Developing Immediate Next Steps
  • Defining Timetable and Milestones for the Pilot Project
  • Q&A and Wrap Up

Participation of EuroPso in the EADV Pan-European Dermatology Congress

The annual conference of the European Academy of Dermatology and Venereology was held in Berlin from October 11 to 14, 2023. With over 15,000 delegates from 50 countries and 600 speakers in attendance, the conference featured more than 180 sessions showcasing the latest developments in dermatology.

Notably, representatives from patient associations actively participated in the event. Among them were Mr. Jan Koren, the President of Euro-Pso, Mr. David Trigos, the Vice President, and Ms. Tina Koukopoulou,  Member of the Board.

EuroPso took part in the Patients’ Village, utilizing the platform to inform conference delegates about their initiatives and underscore the significance of patient-centric approaches to treatment and information dissemination.

Moreover, Ms. Tina Koukopoulou actively engaged in the Patients’ Task Force, a program initiated in 2022 aimed at fostering collaboration between patients and dermatologists. This initiative amplifies the patient voice, allowing them to share their experiences with the disease and emphasize the importance of effective doctor-patient communication

Doing More than a Scratch Report

Challenging the status quo in psoriasis care through the ‘Epicensus’ programme

We at EUROPSO are delighted to be partnering with UCB Pharma to challenge the status quo in psoriasis care through the European-wide ‘Epicensus’ programme. This programme aims to reach agreement (consensus) on important issues that limit the standard of care for psoriasis – and drive positive change – allowing you to live your life to the fullest.

Outcomes from the consensus process were published recently in the medical journal Dermatology and Therapy[i]. Jan Koren (President of EUROPSO) represents our psoriasis community as the lead author, ensuring that your views are at the heart of the programme.

About psoriasis

Psoriasis is an inflammatory skin disease caused by a dysfunctional immune system, leading to an overgrowth of skin cells. This can cause visible skin irritation such as raised lesions (plaques) and scales, resulting in itching, burning, and stinging sensations[ii]. Importantly, psoriasis presents both physical and psychological challenges for patients, which can lead to isolation and depression.

Despite advances in the management of psoriasis, there is still room for improving patient care. However, for meaningful improvements to be identified and made reality, it is essential to recognise the views of everyone involved. This multiple stakeholder approach is unique to Epicensus.

What is the Epicensus programme?

The Epicensus programme brings together three important groups of people (stakeholders): dermatologists, payors, and patient representatives (such as EUROPSO), with a focus on improving the standard of care.

How is the Epicensus programme carried out?

First, a questionnaire was sent out to the stakeholder groups to identify current problems in the standard of care for psoriasis. Following this, eight key themes for change were recognised:

  1. Improve healthcare systems to better support multidisciplinary team working and digital services
  2. Optimise real-world data generation and use
  3. Improve patient access
  4. Elevate quality-of-life measures as the most important outcomes
  5. Involve patients in people-centred and personalised approaches to care
  6. Improve the relevance and reach of guidelines
  7. Education
  8. Multistakeholder engagement

Next, a panel of experts representing the different stakeholder groups anonymously took part in a consensus process (Delphi) to reach agreement on statements describing the current problems in psoriasis care, each related to the key themes.

Interestingly, several problems that were revealed were similar to some identified over a decade ago. This highlights that simply recognising what needs to change is not enough to bring about improvements: action must be taken.

Therefore, the panel of experts then met to produce specific ‘Calls to Action’ – practical steps that, if put into practice, should contribute to an improvement in the standard of care for people living with psoriasis.

Raising awareness of psoriasis and Epicensus programme

The outcomes of Epicensus were published in Dermatology and Therapy in December 2022, co-authored by the expert panel that participated in the programme[i].

This paper opens a channel of communication to stakeholders who would not usually work together, to address problems in psoriasis care. Additionally, it helps identify where patients would benefit most from an elevation to the standard of care. It proposes a clear call-to-action framework, which increases the likelihood of real and beneficial change.

The call now goes out to you, the psoriasis community, to help bring about practical improvements in care for patients across Europe.

Read the full paper here*[i] and ask yourself what you can do to help turn the calls to action into a better reality for people living with psoriasis.

*Featuring a plain language summary and visual representations to enhance accessibility and educational value – access these digital features here.

References:

  • Koren J, Lambert JLW, Thomsen SF, et al. Evaluating the Standard of Care for Patients with Psoriasis: ‘Calls to Action’ from Epicensus, a Multistakeholder Pan-European Initiative. Dermatol Ther (Heidelb). 2023;13:245–268
  • National Psoriasis Foundation. About psoriasis. https://www.psoriasis.org/about-psoriasis/. Accessed: April 2023.

Uniting Hope and Innovation: The IFPA Forum in Asia 2023 and Its Global Significance for Psoriatic Patients

The second International Federation of Psoriasis Associations (IFPA) Forum in Asia 2023 took place in Singapore beginning of July on the margins of the World Congress of Dermatology. This IFPA Forum was focused on the unmet needs of people living with psoriatic disease in Asia and their solutions. EUROPSO was proudly represented by our President, Jan Koren, two of our Board members, Jaime Melancia from Portugal and Tina Koukopoulou from Greece, along with other individual members.

The Forum was set from the beginning to become a landmark event, bringing together psoriatic patients, medical professionals, researchers, and policymakers from around the world. This biennial gathering, hosted in Asia for the first time, promises to create a platform for shared knowledge, collaboration, and empowerment for the psoriatic patient community. With a focus on hope and innovation, the IFPA Forum 2023 holds immense importance for shaping the future of psoriasis treatment and advocacy worldwide.

Bringing Psoriatic Patients Together

The IFPA Forum serves as a beacon of unity, uniting psoriatic patients from diverse backgrounds and cultures. By fostering a sense of community, attendees find solace in knowing they are not alone in their journey with psoriasis. Patients exchange personal experiences, challenges, and triumphs, while gaining inspiration and motivation to face the condition head-on. To access the IFPA Forum 2023 Briefing Book please click here.

Access to Cutting-Edge Research

One of the central pillars of the IFPA Forum in Asia 2023 is its commitment to disseminating the latest advancements in psoriasis research. Leading dermatologists, researchers, and medical experts present their findings and share insights into emerging treatments and therapies. This invaluable knowledge exchange empowers patients to make informed decisions about their treatment options and provides hope for those seeking relief from the burdens of psoriasis.

Advocacy for Psoriasis Awareness

Beyond its role as a knowledge-sharing platform, the IFPA Forum champions the cause of raising awareness about psoriasis on a global scale. Through symposiums and workshops, participants delve into the various challenges faced by psoriatic patients, including stigma, discrimination, and limited access to healthcare. Armed with newfound knowledge and perspectives, attendees return to their home countries empowered to advocate for improved patient rights and social acceptance.

Pioneering Psoriasis Treatment and Care

The IFPA Forum 2023 fosters a collaborative environment that encourages cross-border cooperation among healthcare professionals and industry stakeholders. This collaborative approach fuels advancements in psoriasis treatment, facilitating the development of novel therapies and patient-centric care models. By embracing a collective commitment to innovation, participants contribute to a brighter future for psoriatic patients worldwide.

Global Impact and Outreach

As Asia takes center stage for the IFPA Forum, its global impact cannot be underestimated. Asia, with its vast population and diverse healthcare systems, presents unique opportunities and challenges in managing psoriasis. By hosting the Forum in Asia, the IFPA expands its reach to regions that may have been underrepresented in previous gatherings, thereby promoting global inclusivity and knowledge sharing.

„The IFPA Forum in Asia 2023 stands as a symbol of hope, unity, and progress for the psoriatic patient community worldwide“ said Jan Koren, EUROPSO President.

By creating an inclusive and collaborative space, this groundbreaking event strives to leave a lasting impact on research, treatment, and advocacy efforts for psoriasis. As patients, healthcare professionals, and advocates come together, they embody the spirit of solidarity, determined to reshape the landscape of psoriasis care and awareness on a global scale.

„The IFPA Forum 2023 is not just an event; it is a catalyst for positive change, forging a path towards a brighter future for all those affected by psoriasis“ concluded Koren.

Featured image credit: IFPA, Twitter