Newly Diagnosed?

When you, your child or loved one is diagnosed with Niemann-Pick disease (ASMD or NPC), it can have a profound effect on your whole family. For many people, a diagnosis of Niemann-Pick disease does not happen instantly and can come at the end of weeks or months of tests and investigations.

In many cases this can be the point from which you begin to contemplate the future…

During this period of adjustment you and your family and friends may face what feels like a never-ending round of appointments as you begin to meet with the many professionals who will form a network of care around you or your loved one and you may find yourself having to tell your story time and time again. Hearing the news that your child, family member or friend has a life-affecting disease, but that no one can tell you the exact path the disease will take, may make you feel that your hopes and dreams have been shattered.

At this time there is a lot to think about. Diagnosis comes at a point when you may not be capable of thinking clearly or taking information in.

We have people dedicated to support you to digest all the information:

• Our Families Officer, who can offer advice on a range of topics including education and social welfare.
• Our Clinical Nurse Specialist who provides advice and information regarding all aspects of Niemann-Pick diseases.
• And our entire Central Office Team, who are always available to provide information about Niemann-Pick diseases and all aspects of the support we provide for families and friends.

If you would like to speak to someone about any aspect of the disease(s):

• Call the 24-hour helpline on 0191 415 0693
• Send us an email at info@npuk.org