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 |
What is Transition?Transition takes place between the ages of 14-25, and is the time when young people have to make important decisions about their future. Like all teenagers and young adults, those with disabilities will inevitably experience the ups and downs of adolescence; however these experiences may be more problematic than their non-disabled peers, due to additional health problems and the fact that they are often involved with a number of additional support agencies........Read more |
Care & Support
Niemann-Pick Clinic Days
Dr
Ed Wraith is a Consultant Paediatrician with a special interest in metabolic
disease, based at Royal Manchester Children’s Hospital. He is also Medical
Advisor to the Niemann-Pick Disease Group (UK) and The Mucopolysaccharide Society. He has extensive experience in caring for
patients with lysosomal storage disorders and has written over 200 articles,
abstracts, and book chapters on topics related to inborn errors of the
metabolism.
Working alongside him at the
Royal Manchester Children's Hospital is Jackie Imrie, Clinical Nurse Specialist
for NPD. Although based in
Manchester, both care
for families throughout the UK.
As Dr Wraith sees the majority of patients affected
by NPD,
Clinic Days have been organised that incorporate more than just a routine
appointment. Patients and their families
are given the opportunity to meet and talk to others in their situation, as
well as speak in confidence to Dr Wraith and Jackie Imrie. Often, a buffet lunch is available and those
attending are encouraged ask questions in an informal atmosphere. If there is a particular subject that
families are keen to know more about, Jackie will arrange for this information
to be made available.
If any family who does not see Dr Wraith would like to
participate in the social side of Clinic Days, they are welcome to do so. Please contact Jackie for more details.
For all families attending Clinic Days, please do let
us know if there is any particular subject you would like us to cover. We will ensure the information you require is
made available to you.
Some families are not in a position to attend Clinic
Days in
Manchester,
especially if their child is unwell. Dr
Wraith does attend clinics in many areas and if you feel it would be better to
see him locally please do contact Jackie to discuss this. Jackie is also very willing to make home
visits if necessary.
If you would like to attend one of the Clinic Days,
but require financial assistance, again, please do contact Jackie on 0161 701
2414 or email Jacqueline.imrie@cmft.nhs.uk she will be more than happy to help.