The SPAGN Blog
METÁFORAS QUE IMPORTAN ¿Somos raros? ¿Somos guerreros?
El uso de metáforas está estrechamente relacionado con el cáncer: recurrimos a ellas porque la literalidad a veces es aterradora. Y porque, dentro de la zona de confort del lenguaje, podemos salvarnos (o condenarnos). Natalia Fernández, investigadora del lenguaje de los pacientes con sarcoma, analiza por qué recurrimos a las metáforas y aboga por humanizar nuestro lenguaje.
Why and How should I support SPAGN? Global networking is essential for progress in sarcoma care
The sadness about the death of her 34-year-old sister Paola and the frustration about the few options available for sarcoma patients, instilled – 17 years ago – the wish in Ornella Gonzato to do something to make sarcoma patients less ‘invisible’. In the wake of the forthcoming SPAGN annual conference, the longstanding Board member calls upon patients and patient advocates in getting active to support the global network for sarcoma patients. From her own experience she can tell why it makes a difference to others and oneself and gives tips about how to get started.
Some metaphors that matter – Are we rare? Are we warriors?
The use of metaphors is closely connected with cancer: We turn to them because literalness is sometimes terrifying. And because, within the comfort zone of language, we can save (or condemn) ourselves. Natalia Fernández, researcher into language of sarcoma patients, analyses why we resort to metaphors and pleads for humanizing our language.
Germany’s voice of the sarcoma hotline: A life commitment to volunteering
20 years ago, Karin Arndt was diagnosed with clear cell sarcoma and uncertain perspectives. Grateful for a lucky outcome despite a turbulent journey, she has dedicated her life to patient advocacy for 18 years now. This year, she turns 70. A portrait of a remarkable woman.
Reflecting on 2024: A Special Year for SPAGN
The year of the 15th anniversary of SPAGN has been a great success full of projects and partnerships for the benefit of sarcoma patients. 2024 showcases the wonderful development of the network since its creation. Our Chief Executive Kathrin Schuster looks back at the year with pride and sends a big thank you to all members, supporters and colleagues!
The story behind the Sarcoma of the Year
World sarcoma specialists discussed recently latest developments in treatments of dedifferentiated liposarcoma, or DDLPS, an aggressive and rare type of cancer. They gathered at the annual conference of the Connective Tissue Oncology Society (CTOS) in San Diego (USA) from 13 to 16 November 2024. Expectations were high on studies ongoing, but for most patients and patient advocates the intricacies of what is special about dedifferentiated liposarcoma are not easy to grasp. Professor Robin Jones, medical oncologist specializing in sarcomas, gives some insights in an interview with Gabi Ott, Editor-in-Chief of the Voices of Sarcoma blog.
Kids with cancer encourage each other
Having gone through herself a terribly difficult childhood – being diagnosed with Ewing sarcoma at the age of 3 ½ years – Marcsi Benkő (14) wanted to help other children fighting cancer in coping with the challenges they face during treatment. She remembered how the other kids in the hospital ward had helped her by explaining things that she could not understand, and she was deeply scared of. The idea of producing short video messages narrated by peer children in their own words emerged. Read here Marcsi’s touching story about her journey from a child with Ewing sarcoma to a teenage patient advocate.
Not just any cancer information day…. from the diary of a patient advocate
More than five years after therapy, our Editor-in-Chief Gabi Ott went back to the hospital where she was treated. But this time, it was not as a patient but as a patient advocate. Together with her colleagues, she attended to people looking for information on sarcoma. Being in the building also brought back memories of her darkest days – and the many people who helped her during this journey. A tribute to the nurses and doctors, and a patient organization.
Bridging the Gap in Sarcoma Care: A Vision for South Africa
Sarcoma patients in South Africa struggle to find the expertise required for correct diagnosis and appropriate treatment. Lauren Pretorius, Chief Executive Office of Campaigning for Cancer, provides her vision on how sarcoma care in South Africa can be transformed.
Detecting sarcomas early is crucial
Diagnosing sarcomas is important but challenging: they are so rare that many doctors come across only a handful during their careers, and early symptoms are often vague. Soft tissue sarcomas being his specialisation, Dr. Avirup Chowdury from the Institute of Cancer Research in London, takes us through the diagnostic pathway and identifies key factors of an ideal scenario. He also give pointers for patients of suspicious symptoms.
Abbie’s Determination to Sock it to Sarcoma!
Mandy Basson is a mother on a mission. Her daughter Abbie’s diagnosis of Ewing’s Sarcoma started a journey to improve diagnosis and treatment pathways for sarcoma patients in rural healthcare systems. This is the story of the birth of Sock it to Sarcoma!
Artificial intelligence – what does it mean to us?
We live in truly interesting times, finds Gerard van Oortmerssen, Co-Chair of the SPAGN Board. The latest wave of digital revolution, artificial intelligence, creates new opportunities for sarcoma patients and patient advocates. AI can facilitate access to information and peer-to-peer support. Moreover, it allows to collect patient reported outcomes and thus give sarcoma patients a stronger voice and say in research and care.
Would you like to submit a text to Voices of Sarcoma?
The blog Voices of Sarcoma covers topics of interest to the wider SPAGN community, which includes patient advocates of our Member Groups, sarcoma patients and caregivers, as well as members of the medical profession. The aim of the blog is to convey information, share experiences and viewpoints, and strengthen the bonds of the international sarcoma community. While Voices of Sarcoma welcomes submissions on a wide range of topics, we ask that you adhere to our Editorial Guidelines. Find out more.
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