In the words of Norberto Villarrasa, General Director of the Southern Cluster (Spain, Portugal, Italy) at Kyowa Kirin: “From Kyowa Kirin we wanted to make this documentary to put ourselves in the shoes of patients, as it allows us to show the day-to-day life of people with rare diseases, such as cutaneous T-cell lymphomas. We trust that the documentary beyond the skin It will allow pathology to be increasingly 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 soon reach patients around the world, that is our commitment, a commitment to life”.
This documentary was created with the intention of give visibility to cutaneous T-cell lymphomas, a rare disease that affects about 240 people per million in Europe10. The film features the testimonies of Teresa Muñoz and José Ángel Bernabéu, two patients with CTCL, specifically one of the rarest and most aggressive subtypes of CTCL, Sézary Syndrome, who narrate how they felt when they received the diagnosis of an unknown disease, symptoms, and how they communicated it to their family. They also recount the phases of the disease they have been going through over the years and how comforting it has been to contact people who live in the same situation.
“We want to thank Kyowa Kirin for her involvement in this project, which aims to make visible the reality that patients with cutaneous T-cell lymphoma experience, a lymphoma that is not well known by society in general, which carries a certain stigma, how it affects the quality of life of these patients and their families and how we at AEAL can offer them help throughout the disease process”, he comments Begoña Barragán, president of AEAL.
CTCLs are a rare, sometimes severe, and life-threatening form of non-Hodgkin’s lymphomas.1,2 what they can affect the blood, lymph nodes and viscera, presenting mainly in the skina1,8. CTCLs can have a profound impact on patients’ health-related quality of life and psychological well-being5. Skin changes and itching cause depression, sleep disturbance and fatigue6.
CTCLs account for about 4% of all cases of non-Hodgkin’s lymphoma9 and up to 80% of all primary cutaneous lymphomas7. The survival of this pathology in advanced stages is around 4.7 years13. When there is a high tumor burden in the blood, it is 4.64 years compared to 29.28 years, when there is not1.
Another issue that is present in the documentary is its difficult diagnosis and how important it is to address this aggressive disease as soon as possible. The diagnosis of CTCL, especially in the early stages, is difficult due to the presence of multiple clinical manifestations4. 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 34% of patients have presented a progression of the disease13.
As a preview of the documentary, Kyowa Kirin shows the trailer in which he offers some brushstrokes of the film’s content.
To learn more about the pathology and its implications, you can visit this link.