Degos disease: A District Nurse Perspective UK
I moved into this district nursing post in September 2001 and ‘inherited’ Judith who was already on the caseload of the previous district nurse. The first thing that struck me as being unusual was that we were going in daily to dress wounds on her feet that we would normally only dress once or twice a week. I seem to remember trying to cut the visits down to every other day but no matter what we put on, they always stuck if we left the dressings on any longer than for a day, and this meant that Judith experienced excruciating pain. It became obvious that these wounds were not ‘normal’.
I was informed from the beginning that the disease was classified as terminal and that there is not yet a cure. Therefore, another reason for our visits was to support Judith through her illness. Judith often looks very well and it is very difficult to think of her as seriously ill. Because of this, when her ulcers were almost healed last year, Judith was dressing them herself and we withdrew. However, the ulcers did not heal and Judith called us in for advice. When I visited, treatment for the ulcers was discussed but I was surprised to find how desperate Judith had become before seeking help, and I realised how valuable the support visits had been for Judiths mental health. She told me how isolated she had felt at times, how she didn’t like to ring up and ‘bother’ anyone and how low she became sometimes on hearing of the loss of others with the same disease. I decided at this time that we would recommence regular visits and continue them even if Judith had no physical nursing needs.
Through visiting regularly, I feel that our district nursing team has a good understanding of, and empathy for Judith. We have watched her going through almost unbearable pain (and treatment for it which was sometimes as bad as the pain itself). As there seems to be no set pattern for the progression of Degos disease, sufferers do not know what the future has in store. Judith tries to put this from her mind and is always available to listen to others problems and help where she can. When Judith asked me to write this, we reflected on the fact that unless sufferers had physical nursing needs, they would probably not have contact with a district nurse.
We haven’t known anyone else with this disease and so are not sure that we’re doing the ‘right thing’ but are willing to learn with Judith.
She is always a pleasure to visit and I hope that our visits and our liaison with her GP make some contribution to improving her quality of life.