Receiving the diagnosis for a genetic condition which is currently incurable, is a shock for most people, even when you have suspected for a long time that “something is very wrong”. Some people are diagnosed very quickly after the onset of infections and this can be such a shock that people find it difficult to believe that they have a serious, life-long, life-threatening condition. However, the UKPIPS community will support you no matter how you feel about your diagnosis. People living with life-long conditions go through the grief cycle (link here) and understanding how this impacts on you may make sense of how you are feeling about your diagnosis. Unlike people who have suffered the loss of a loved one, people who have suffered the loss of health can never complete the grief cycle and may find themselves feeling angry, or sad, or in denial about their illness many times during their lives.