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Genetic Condition Support
Lankelly
February 16, 2013 23:35
Hello.I am interested in linking up with f/carers and adopters who have children at risk from serious genetic conditions. Particuarly those that are not typically diagnosed until onset of symptoms or early adult years. We have a family of three, two birth sibs and last one yet to be adopted.All communications are treated with the respect you wish for and the children need. We are in this for the long haul and need to develop a network of support within and for the adoptive families out there.Many thanks for reading.
true
February 17, 2013 23:20
http://www.patient.co.uk/directory/genetic-disorders-and-syndromeson this site there is a list of organisations such as 'Contact a family' and 'rare'you might be able to do this the other way round - find a genetic condition support group then ask within it are there other adopters
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Lankelly
February 23, 2013 21:42
thanks allfor the information. i am really interested to know of how info is shared with the child as they grow to make them aware of the risks before they are too old... also the references in life story books or lack of! re the bp illness and death. also...the impact on third child who has no risk himself... how to and when to introduce genetics and risks that adopted sibs face.If anyone can share their experiences or ideas it'd be great, maybe we can share more issues?
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true
February 23, 2013 23:42
ask for a referral to your local genetics department - they can discuss with you how to raise issues and at what agegenetics nurses can help with this
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boobookitty
February 24, 2013 19:50
I will pm you
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