Disease has ravaged De Schepper’s family
On 5 April, Jeroen De Schepper will set off on his bike from the technical college where he works in Ghent. The next time his family, students and colleagues see him will be four months later, by which time he will have covered 10,000 kilometres.
De Schepper, 34, is riding north through Scandinavia and then west through the British Isles to raise money for Huntington’s Disease, which has ravaged his family.
Huntington’s disease is a degenerative genetic disorder that results in psychiatric problems, mental decline and debilitating muscular spasms, known as chorea. The disease usually appears in adult life in people who have the disorder from birth; the child of someone who has the disease has a 50% chance of developing it. Genetic testing can identify the disorder before symptoms begin, but no cure yet exists.
De Schepper’s aunt Emma has it, as did her mother, two aunts and an uncle. Emma’s sister Bea, De Schepper’s, mother, does not have the disease, and so De Schepper is also safe. Bea is now the president of the European Huntington Federation, as well as the full-time caregiver for her sister, Emma.
“My aunt Emma is no longer able to get out of her chair. She is chained to it,” explains De Schepper on his blog. “I am travelling for her, so she can see the far-off places she can’t experience from close by. I want to be her champion before she is no longer there. … Through this blog and the pictures I want to offer this trip to all Huntington patients.”
Along the way, he’ll be trying to raise awareness around the disease and money for patient groups and care facilities. The action is being supported by Ghent University rector Anne De Paepe. Before being elected rector, she was head of the department of medical genetics at the university, where she was closely involved in the care of patients with the disease.
“It will take blood, sweat and blisters (on my bum), being away from everything familiar for four months,” De Schepper writes. “But I am not alone in this challenge. I am overwhelmed by the support I have received from everyone who I’ve told about the project.”