When they told her, following almost three years trying to find out what was wrong with her (“it’s an allergy”, they told her) that she was suffering from a rare, deadly and untreated disease that would take her life in a period of 3 to 5 years, Teresa only He thought of his daughter Daniela and the letter he needed to write to his sister to tell her in the best possible way: without breaking down. And she so she did it. “Hello little sister, I am writing this to you because it seems that I will be able to explain myself better without scaring you. Finally, they have found a diagnosis. I have an unusual disease in young people and, above all, in women. I am not going to tell you the specific name to prevent you from searching for information like crazy, just like I have done, but, on a daily basis, it is called cancer. My white blood cells, which are the body’s defenses, are turning into cancer cells, which have attacked my skin first.”
so it begins beyond the skinthe documentary that wants to make visible the reality of patients with Cutaneous T-Cell Lymphomas (CTCL), a rare, sometimes severe and life-threatening form of non-Hodgkin’s lymphoma2,3 affecting regarding 240 people per million in Europe1.
The film, which was presented last Saturday at the Film Academy by Kyowa Kirin and the Spanish Association of People Affected by Lymphoma, Myeloma and Leukemia (AEAL), gathers the main complications and concerns that, on a physical, mental and emotional level, go through people suffering from the disease. And to answer all these questions, it also sets out some advice, such as making use of the psychological, legal and health assistance offered by AEAL. In this sense, the committee of medical professionals of the association offers recommendations on nutrition, physical exercise and skin care, among other topics.
Two great protagonists
Directed by filmmaker Ander Duque, beyond the skin features the testimony of its two great protagonists: Teresa Muñoz and José Ángel Bernabéu, two patients with one of the rarest and most aggressive subtypes of CTCL, Sézary Syndrome. And also two strangers who found in one phrase the germ of their great friendship: “Live your life, no one will die for you.” How they felt when they received the diagnosis of this unknown disease, the impact that the news had on their lives and how they communicated it to their families are aspects that both share in the documentary. They also recount the phases they have gone through over the years and how comforting it has been to contact people who live in the same situation.
“I was diagnosed immediately, 10 years ago in November. As soon as I went to my hospital, because what I had was not normal, they did a hematology test. The hematologist was surprised and told me clearly that the issue had no treatment and that it was something very big. Not knowing what to do, over time I tried to locate, just as you have once told me, someone else who suffered the same as me or something similar, and it took me almost two years to be able to talk to someone, “he says by videoconference Jose Angel to Teresa. And it goes on.
“During all this, my body got worse, the symptoms, the discomfort, the headache, the symptoms of lymphoma, in general, and the itching, which is the most desperate thing regarding this issue. Somehow, given that situation, I assumed it was fatal, that there was no cure, two to four years of survival. I spoke with my wife, it was a drama and, ultimately, I said goodbye. It was a very sad moment, but I had to draw strength from her, more than anything because my concern at that moment was more for her than for me, ”he shares with Teresa.
A difficult diagnosis
beyond the skin It also addresses issues such as the difficult diagnosis and the need to identify the disease early. The diagnosis of CTCL, especially in the early stages, is difficult due to the presence of multiple clinical manifestations7. The median time from symptom onset to diagnosis in retrospective series is 3-4 years, but can exceed four decades. There are publications that indicate that, as a consequence, 34% of patients have presented a progression of the disease8.
CTCLs can affect the blood, lymph nodes, and viscera, occurring primarily in the skin.1,4. These types of lymphomas can have a profound impact on the health-related quality of life and psychological well-being of patients.5. So much so that changes in the skin and itching can lead to depression, sleep disorders and fatigue.4. “The quality of life for CTCL patients can be disastrous. Even in the initial phases, patients have their relationship life very altered, as they are visible lesions on the skin. Sometimes the itching is uncontrollable and does not let them rest for a minute. When the lesions are tumorous, they hurt, bleed, become infected and smell. The caregivers of these patients also suffer the unspeakable”, explains the Dr. Pablo Ortiz Romero, Head of the Dermatology Service at the 12 de Octubre University Hospital in Madrid.
Keys and challenges, to debate
The presentation of beyond the skin brought together medical professionals from different parts of Spain, who discussed healthcare needs, the keys to diagnosis, the challenges in quality of life, patient management and how to approach them from a multidisciplinary approach. In addition, following the documentary, a debate was held to talk regarding the experience of a patient with Sézary Syndrome, in which Marcos Martínez, manager of the Spanish Association of People Affected by Lymphoma, Myeloma and Leukemia (AEAL), participated.
“It is an honor to celebrate this meeting hand in hand with Kyowa Kirin, in which medical professionals and patients with CTCL meet to value the impact that this disease can have on the quality of life of people who suffer from it. Also, this documentary allows us to know the pathology in a deeper way, favoring the multidisciplinary approach that is so important for this type of patients”, expressed the Dr. Ortiz.
In the words of Norberto Villarrasa, CEO of the Southern Cluster (Spain, Portugal, Italy) at Kyowa Kirin, “we wanted to create this documentary with the intention of putting ourselves in the shoes of patients, to show the day-to-day life of people with rare diseases, such as cutaneous T-cell lymphomas. Thus, we want this pathology to be better known and, above all, better understood by everyone. This initiative also reinforces our commitment to innovation. The Kyowa Kirin team works to ensure that these innovative therapies reach patients around the world soon, that is our commitment, a commitment to life.”
For its part, Begoña Barragán, president of AEAL, thanked all the support provided by Kyowa Kirin. “We want to thank you for your involvement in this project, which aims to make visible the reality experienced by patients with cutaneous T-cell lymphoma, a lymphoma that is not well known by society in general and that carries a certain stigma. Likewise, it reflects how it affects the quality of life of these patients and their families and we wanted to show how we at AEAL can offer them help throughout the disease process”.
More information regarding this pathology and its implications in: http://lcctmasalladelapiel.com/
To see the documentary, you can go to the following link: lcctpongamonosensupiel.com
Sobre Kyowa Kirin
Kyowa Kirin develops and offers innovative medicines with the purpose of changing lives. As a global specialty pharmaceutical company headquartered in Japan with a history of more than 70 years, it applies cutting-edge technologies, including monoclonal antibody research and engineering expertise, to address the needs of patients and society in multiple therapeutic areas such as Nephrology, Oncology, Immunology / Allergology and Neurology. More information at: https://www.kyowakirin.com
