06/11/2025
"That's the thing with this disease: It doesn't just affect the person who has the gene, but entire families." What Martha is referring to here is Huntington's Disease (HD) that has a 50% chance of being inherited. If a parent has the condition, there is a high likelihood that their child could inherit it as well.
Our patient journey movie "Huntington's Family" portrays the life of a family that is affected by this disease: There is Martha, who is carer to her husband Tom and their daughter Rachel, who also has HD. And there is Rachel's daughter Chloe, who went to genetic counselling and is in the process of being tested. While Rachel's brother doesn't want to be tested, but whose wife is expecting a child that could have the gene, too. "It's a slow train wreck", Martha says.
The movie shows the different family members’ coping strategies over the years, thereby capturing both their struggles and their moments of light.
https://youtu.be/nqVjbJrK1tA European Huntington Association Българска Хънтингтън Асоциация - Bulgarian Huntington Association Association Huntington France Huntington's Australia Deutsche Huntington-Hilfe e.V. Huntingtono ligos asociacija ACHE Corea Huntington Española
European Federation of Neurological Associations EURORDIS-Rare Diseases Europe Dystonia Europe Euro-ataxia Jardin Joint Action EPNS - European Paediatric Neurology Society European Academy of Childhood-onset Disability
"That's the thing with this disease: It doesn't just affect the person who has the gene, but entire families." What Martha is referring here to, is the fact,...
