Today, 11 February, saw the presentation of the report "Living with chronic GIST: impact and experience", promoted by the Josep Carreras Foundation and supported by Sanofi, in which Punto de Fuga had the pleasure of collaborating. The presentation was attended by our colleague and partner, Laura Torrebadell, who was responsible for leading this study.
The report analyses the social impact and experience of patients living with chronic graft-versus-host disease (cGVHD), a possible complication following bone marrow transplantation, which is no longer simply a sequela but has become a disease in itself. This study, promoted by the Josep Carreras Foundation, combines surveys and testimonies from patients and carers to find out how the disease affects their quality of life.
The results show that chronic GvHD is a multisystemic disease that can affect different organs, especially the skin, eyes, joints and mucous membranes. More than half of patients have constant symptoms and most require immunosuppressive treatments for long periods, with the consequent concern about side effects.
The diagnosis usually occurs after transplantation and, in many cases, without prior knowledge of the disease, which generates fear, uncertainty and frustration. In addition, almost 60% of patients consider CRIE to be an invisible disease that is poorly understood by society. For 7 out of 10, their quality of life is fair, poor or very poor.
The study shows a significant impact on the workplace, economy, society and emotions, both for patients and their carers. It also highlights the need for coordinated multidisciplinary care and greater psychological, economic and social support, as well as the development of new treatments that can alleviate and eradicate the disease.
Overall, the report identifies unmet needs and proposes improving information, support and comprehensive care to reduce the impact of chronic IRD on the daily lives of those who suffer from it.
We hope that this type of information will contribute to improving knowledge and awareness of chronic CID and its real impact on the lives of patients and their families.
If you would like to access the report, you can download it at the following link: Unstoppable Against CIDP Report
