Once diagnosed with PCD, you will be introduced to the PCD team who will look after your care. You will have access to a PCD specialist nurse who can help you with any aspect of having the condition.
Being diagnosed with PCD will affect all members of the family. Patients and their carers can react in many ways to the news that they or their child has a disability or medical condition. There may be feelings of isolation, worry, and a struggle to come to terms with the news, “why me?”. There may be problems balancing work and caring/introducing treatments into your schedule. There may also be increased financial worries and a lack of understanding and support from those around you.
It is important that you talk to someone about the diagnosis. Try to make use of all your support networks – it might be your husband/wife or partner, relative, friend or neighbour or contact us.
After the initial diagnosis, many patients/carers think of lots of questions for their consultant. It is often useful to keep a list of these to ask at your next consultation, but if they are urgent, then contact your clinical nurse specialist.
You might find a professional counselling service a helpful way of unloading some of your thoughts and feelings. You can ask your PCD specialist nurse about this, or talk to your GP, who should be able to tell you about any local services.