“It all started when I suddenly began to forget things. You know, not important things, just little things. I was working in the psychiatric system with disabled people. I loved my job. But my energy got less and less and at last I couldn’t work a full day. After a long process of tests, samples and interviews the doctors told me that Huntington’s disease was the reason I wasn’t feeling like myself.” – Katrine

Huntington’s disease is a genetic hereditary disease. The disease depletes the brain slowly and usually erupts in 40-50 years of age. Huntington’s has several stages. In the beginning it is mostly cognitive symptoms such as anxiety, depression and in some cases schizophrenia. Slowly it becomes more physical and eventually the disease will take over the body, so you are unable to walk, talk or think clearly. 

Hundreds of years ago George Huntington, described a number of symptoms that later became known as Huntington's Chorea, meaning dancing feet in Latin. The name comes from involuntary movements in the arms and legs. Something that is very characteristic of the disease, but in reality, it is muscle contractions. Today, the disease is called Huntington's disease, and it is known that the genetic heritage of the disease is on chromosome 4. 

Katrine (45 years old) and Anders (33 years old) is diagnosed with Huntington's disease. They live in an institution in Djursland, Denmark. 

Katrine can't control her body movements, but her mind is still working. She can listen and sometimes understand, but aren't able to talk clearly because of weak muscles in her throat. She suffers from anxiety and is medicated for anxiety and involuntary movements.  

Anders has very little contact to his family and moved into the institution three years ago. He does not have much language left as a consequence of the disease. Often he gets angry and frustrated and to express his frustration he lies on the naked bars of his bed. Anders loves the Terminator movies and all Disney princesses. 

All photos and text from 2016. Katrine passed away in 2018.