The self-help group is in the process of being founded.

Parents group Crohn's disease and ulcerative colitis

Region: Jena

Diagnosis of Crohn's disease and now....


After a long ordeal, we as parents were ultimately grateful when we finally received a diagnosis of Crohn's disease for our then 13-year-old son.
For five years, he suffered from a wide range of symptoms. The last two years, during which his lips were constantly inflamed and reddened, were particularly distressing. Initially, the diagnosis focused on a possible lactose intolerance, but the symptoms remained unchanged. Our son was often too weak to attend school. He seemed listless, could hardly concentrate, grew very little and hardly gained any weight for a whole year.
The diagnosis of Crohn's disease brought clarity on the one hand, but on the other we felt left alone with many questions. During this time, we would have liked to have had a contact point - a regulars' table or contact with other parents whose children had received the same diagnosis. Sharing information about dealing with this chronic illness, treatment options and everyday life with a sick child would have been a great support for us.

This gap is now being filled by a newly founded self-help group that has developed from the community of seven families who were able to sail on the IJsselmeer with the Sailing Kids association this summer. During this intensive week on the water, we parents had the opportunity to share our concerns and experiences at length. All the children in this group share the same diagnosis and we parents struggle with similar challenges. But the kids also had the opportunity to talk to people with the same condition.

This exchange gave rise to the idea of continuing this community after the sailing trip. Our support group is now intended to help other parents find their way in dealing with Crohn's disease. Here, experiences can be shared, encouragement given and practical tips exchanged.

Our aim is not only to provide comfort, but also to build a strong network to support other affected families.

Disease profile

The diagnosis of Crohn's disease brought clarity on the one hand, but on the other we felt left alone with many questions. During this time, we would have liked to have had a contact point - a regulars' table or contact with other parents whose children have been diagnosed with the same disease. Sharing information about dealing with this chronic illness, treatment options and everyday life with a sick child would have been a great support for us.

Goals and tasks

First and foremost, the group is about talking together in order to find strength and support in dealing with the illness in a compassionate way.

Group meetings

The group meetings take place by arrangement. If you are interested, please register with IKOS.

Contact

IKOS Mrs Bettina Brenning 07747 Jena

Phone: 036418741160

ikos.brenning@awo-mittewest-thueringen.de