Genetic Counselling Genetic counselling can help people affected by Niemann-Pick disease to understand the nature of the disease and the effect it will have on their lives. People seeking this type of counselling may be newly diagnosed patients, couples planning a pregnancy, new parents or extended family members concerned that they too may be a carrier of the disease........Read more |
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Care & Support
Genetic Counselling
Genetic counselling can help people affected by Niemann-Pick disease to understand the nature of the disease and the effect it will have on their lives. People seeking this type of counselling may be newly diagnosed patients, couples planning a pregnancy, new parents or extended family members concerned that they too may be a carrier of the disease.
Most people are referred to a Genetic Counsellor through their GP or hospital consultant following a diagnosis. Others seek advice following the discovery of a genetic disease in their family. Counsellors can act as patient advocate as well as being a genetic resource for other health care professionals. They form part of a wider healthcare team, involving among others, geneticists, consultants and nurse specialists.
A Counsellor will help you to understand what a diagnosis of Niemann-Pick disease will mean in practical terms; they will explain the factual information about the disease, inform you of the options available for prevention/testing and explain the risk of recurrence. They are trained to help you through the inevitable emotions that a diagnosis of Niemann-Pick disease arouses and will support you in making informed decisions about the future. Counsellors are sensitive to the fact that no two patients are the same and that a diagnosis of Niemann-PIck disease can affect people in many different ways. During the first session, the Counsellor will discuss your family history, enabling them to tailor future sessions to meet your specific needs.
Genetic counselling is just one of the services offered by the NPDG (UK). If you feel that you, or a member of your family would benefit from this service, please contact us for more information or to arrange an appointment.