Ultra rare disease not uncommon in the Faroes

Glycogen Storage Disease, also known as GSD, is a hereditary condition classified as an Ultra Rare Disease.

The condition changes the way the body uses and stores glycogen, which is a main source of energy for the body.

GSD sufferers are missing one of the enzymes that breaks down glycogen. When an enzyme is missing, glycogen can build up in the liver or may not form properly. This can cause problems in the liver or other parts of the body.

Mysterious condition

Five people in Denmark have been diagnosed with the disease. In the Faroes, this number is 18.

Two of these 18 are Páll Rói Poulsen and Kitty Madsen’s children, Hervør and André.

It took a long time to figure out what was wrong, and this was a very lonely and frustrating period for the parents.

Information

As not many doctors know about this rare disease, the couple have set out to inform the public about it on their Facebook profiles.

The Faroese GSD association also has a Facebook page.

Most of the information is in Faroese only, but contact information is available on the page.

Translated by prosa.fo