Just to let you know that a doctor called Moira Blyth came to visit Lucy earlier this week. She is doing research on PKS in the UK, and she has contacted families through Unique. Because of the ethics rules in the UK, she is unable to contact families unless she is giving prior permission through a group such a Unique, but if any UK families want to contact her, she has given permission for me to post her details on here.
Just a rundown of what she did - nothing complicated. She took blood and a mouth swab from Lucy, plus blood from Gary and I, and then just asked a few questions about her birth and weight, and any symptoms Lucy has had. She also took some measurements of her face and limbs, and lastly, some photographs of the markings on her body and her face.
Dr Moira Blyth
Wessex Clinical Genetics Service
Mailpoint 105
Princess Anne Hospital
Coxford Road
Southampton
SO16 5YA
Email: moira.blyth@suht.swest.nhs.uk
Tel: 023-8079-6169 (Can leave a message with secretary on 023-8079-4503)
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