Xeroderma Pigmentosum UK

XPD - neurological presentation

Hi all.

I’m Emily my son Louis is 11 years old and has XPD, with neurological problems including hearing loss, learning difficulties etc...

I’m really keen to speak or hear from anyone with a child/older with similar subtype including neurological defects and how your journey is presenting.

My email is e_tingle1983@yahoo.co.uk if anyone would like to make contact of relevant.

Thank you it has been interesting reading these posts.

4 Replies
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Im debbie i have XPF have u ever been to any camps or conferences I went to Xp conference in london It provided me with alot of information, i had the pleasure to meet others who had XP. Im 4l

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Hi Debbie thanks for your reply. I went to camp years ago with Louis. The international event sounded really interesting I’ve been sent the links to the info from the days so will look forward to hearing more.

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There are stuff on you tube about conferernce take a look

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Hi Emily! I sent you an email! My son also has XP-D.

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