On 20th September 2004 I received a letter from Sweden. This was my first contact with Jonny. He was 55 at the time. He had been diagnosed with CL a few months after his birth. Since early childhood, lung issues linked to Cutis Laxa were a constant worry. But it did not prevent him from getting married and having a son.

Working as psychiatric nurse, and also musician, he was a very caring man.

In 2016 he attended the 5th Cutis Laxa Days in Annecy (France). His presence was a real gift to us all. The testimony of his life journey is a memory we cherish in our hearts.


Exhausted by respiratory and cardio-vascular difficulties, Jonny left this world on 11 December 2019.

We lost a friend but also one of the oldest members of Cutis Laxa Internationale.

We send our loving thoughts to his wife and son.

Marie-Claude Boiteux, Chair