Crohn’s disease is a complex and unpredictable condition that affects millions of people around the world. With symptoms and effects of Crohn’s disease varying greatly from person to person, one thing is clear: there is no typical Crohn’s disease patient.
In the following months, GENEGUT will feature a regular series of patient stories, highlighting the unique experiences of people living with Crohn’s disease. Today, Isabella Haaf, Deputy director and head of communications at EFCCA (European Federation of Crohn’s and Ulcerative Colitis Associations) explains: there is no typical CD patient.
For some people, Crohn’s disease (CD) is a mild inconvenience that can be managed with medication and lifestyle changes. For others, it can be a devastating condition that requires hospitalisation and severely impacts their quality of life and ability to work and socialise. In addition to the physical symptoms, CD can also have a profound emotional and psychological effect on patients. The unpredictability of the condition and the need to constantly monitor and manage symptoms can lead to anxiety, depression, and a sense of isolation.
Crohn’s disease affects individuals at different stages of their life. For instance, a young person with Crohn’s disease who is just entering education may face different challenges compared to an adult who is planning to have a family or start a career.
Younger patients may struggle with the stigma and social isolation that can come with having a chronic illness, as well as the disruptions to their education and social life caused by frequent doctor visits and/or hospitalizations.
Meanwhile, older patients with Crohn’s disease may have concerns about how the disease will impact their health and quality of life as they age. They may worry about the increased risk of complications such as bowel obstruction and colorectal cancer, the interaction with additional, age-related diseases as well as the impact of the disease on their ability to enjoy their retirement years.
It’s important to understand that there is no one-size-fits-all approach to managing Crohn’s disease. Each patient’s experience is unique, and their treatment plan must be tailored to their individual needs and circumstances.
It's important to understand that there is no one-size-fits-all approach to managing Crohn's disease. Each patient's experience is unique, and their treatment plan must be tailored to their individual needs and circumstances.
This is why EFCCA, the European Federation of Crohn’s and Ulcerative Colitis Associations, is committed to raising awareness of the broad range of challenges faced by patients and advocating for better access to care and support services.
We firmly believe that it’s essential to collaborate closely with healthcare providers to create personalised treatment plans that take into account each patient’s unique needs and circumstances. By doing so, we can ensure that individuals with Crohn’s disease receive the care and support they require to live fulfilling and active lives.
We are delighted to be contributing to the upcoming GENEGUT patient stories. By sharing these stories, our goal is to raise awareness of the unique and varied challenges that individuals with Crohn’s disease face.
Isabella Haaf, Deputy Director, EFCCA
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UK participants in Horizon Europe Project GENEGUT are supported by UKRI grant number 10042451 (Bangor University).