The #ENDOs project is a European Initiative dedicated to the education and support of adults facing chronic illnesses, with a particular focus on endometriosis.
The project
The #ENDOs project is a European initiative that educates and supports adults dealing with chronic diseases, with a specific focus on endometriosis. With a potential reach of 14 million women across Europe – who often refer to themselves as “ENDOs,” this project aspires to empower these individuals to take a more active role in their healthcare journey. The project’s innovative approach incorporates the world of art and culture as skill developers, creating user-centric learning tools that aim to build an engaged community of ENDOs and their caregivers. Through performing and visual arts, storytelling, narrative medicine, and digital tools, healthcare experts and ENDOs will facilitate their understanding and communication with each other.
Endometriosis
Endometriosis is characterized by the presence of tissue similar to the lining of the uterus (endometrial-like) located outside the uterus. These fragments are different structurally, and behave differently, from the normal endometrium which is shed during a period.
Its cause is unknown, as well as there is no known way to prevent this disease. Different theories exist about the causes…
What is Endometriosis ?
Endometriosis is an often painful condition characterised by the development of tissues similar to the lining of the womb outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis.
Endometriosis can provoke pain, especially during menstrual periods, as well as fertility problems. Endometriosis significantly affects quality of life due to pain, fatigue, mental health issues, and infertility, often hindering daily activities, including work or school.
Its cause is unknown, as well as there is no known way to prevent this disease. There is no cure, but its symptoms can be treated with medicines or, in some cases, surgery.
Key facts (World Health Organisation):
- Endometriosis affects approximately 10% (190 million) of women and girls of reproductive age worldwide.
- There is currently no known cure for endometriosis and treatment is usually aimed at controlling symptoms.
- Early diagnosis and effective treatment are crucial, yet often limited, especially in low- and middle-income countries.
Challenges
Lack of awareness among both the public and healthcare providers, limited access to treatments, and diagnostic delays pose significant challenges in addressing endometriosis globally.
Improving access to comprehensive care and developing better diagnostic tools and treatment options are current priorities in the response to endometriosis.
Artistic Journey for Endometriosis
#ENDOs project aims to build training tools for European art and culture professionals, as well as patient and carer communities.