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Forum Topics Posts Last Post Moderator(s)    Niemann Pick Disease     Aids and Adaptions At some point all those affected with NPD will require some form of aid or adaptation to assist daily living. This may be as simple as a handrail on the stairs, or it could entail major work to adapt the living areas. The aim is to meet increasing needs and to make life as easy as possible for the whole family. Thinking ahead can be very traumatic for a family; however it is advisable to make arrangements ahead of time, aiming to implement the required changes before they become necessary. There are many aids and adaptations available; families may find it useful to talk about future needs with their Key Worker or the Niemann-Pick Clinical Nurse Specialist or share their experiences and recommendations on this forum. 2 54 17/11/2009 00:21:43 by: carlhenry01     Family Life An opportunity to discuss anything relating to family life in general - special events, holidays, birthdays and milestones 6 65 23/08/2010 22:54:42 by: Helen Carter     Fundraising Discussions about fundraising activities, raise awareness for any upcoming events, or ask for support and advice on fundraising matters here. 19 108 07/09/2010 21:44:49 by: carlhenry01     General Chat/Off Topic Discussion An opportunity for families to communicate on matters not related to NPC. 13 66 31/08/2010 18:00:22 by: Helen Carter     In Loving Memory A tribute to those who have lost the fight against NPC 2 11 19/10/2009 10:29:46 by: Tania     Lets Talk About Research A thread specifically dedicated to all things "research" in the world of Niemann Pick. An opportunity to discuss current research. 1 4 21/12/2009 16:54:59 by: Helen Carter     NIH Observational Study into NPC, Maryland, USA Discuss the Observational Study taking place in the NIH, Maryland,USA. Are your children taking part in this study? What was your experience of your visit to the NIH and the tests your child underwent. 10 103 15/04/2010 22:16:01 by: Helen Carter     Raising Awareness Posts about all awareness related activities including TV, Radio, and other media coverage regarding Niemann Pick Disease. 12 34 08/05/2010 21:14:09 by: Dave Roberts     Support Discussions about Niemann Pick disease, your experiences, questions, comments, for all friends and family of people living with Niemann Pick. 9 55 29/08/2010 10:44:39 by: carlhenry01     Waiting for a diagnosis/recently diagnosed When a child or individual is diagnosed with Niemann-Pick disease it can adversely affect the whole family. The path to this diagnosis is often a difficult one, due to the rarity of the condition and the fact that most people, including medical professionals, know little, if anything, about it. Health and social care services can vary around the country, leaving families feeling bewildered and isolated; this often leads to additional problems such as conflicting advice or a lack of clear information. Dealing with a diagnosis of this nature is difficult enough – without the added frustration of having no-one to talk to who actually understands what you are going through. For many families, a diagnosis of NPD does not happen instantly, but is the point from which they begin to contemplate their future. If your loved one has recently been diagnosed with Niemann-Pick Disease, or if you are facing a long wait for test results, please share your thoughts with others who know how you are feeling and who can provide support during this difficult time. 2 12 16/06/2009 19:13:22 by: kait pyne     Your Childs Health Let us know how your child is doing and share your experiences 11 128 24/08/2010 10:31:28 by: carlhenry01     Zavesca/Miglustat An opportunity to raise questions relating to this drug, post opinions and debate. 2 57 15/06/2009 10:30:32 by: Helen Carter     Statistics   34 of 66 Members have made 697 posts in 12 forums, with the last post on 07/09/2010 21:44:49 by: carlhenry01. There are currently 89 topics and 4 active topics since you last visited. Please welcome our newest member: drcsparker. Contains new posts since last visit. No new posts since the last visit.

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Information posted on this forum should not be taken as a substitute for specialist medical advice. Please address medical queries to your medical team. Please remember that each child's symptoms may vary and the experience of one will not necessarily be the same as another. "Hope for Hollie" does not accept any responsibility for advice given on this forum and would advise all families and carers to seek professional medical advice before acting on anything contained herein This forum has been set up for parents, family members and other individuals affected by Niemann Pick disease to share experiences. This forum is reviewed regularly to check for inappropriate content. However, if you feel that a message should be drawn to our attention or if you have any queries concerning the forum please email info@hopeforhollie.co.uk. Forum users should be aware that although all best endeavours are taken to remove inappropriate content from this forum there could be instances where unscrupulous web-surfers enter the site. We therefore strongly advise that you do not include personal details in your posts - in particular home address, telephone numbers, personal email and blog addresses. If you are affected by anything you read in the forum and you would like to seek further information or support you can contact the Executive Director of the Niemann Pick Disease Group by email at niemann-pick@tiscali.co.uk or telephone 0191 4150693"