08 August 2016
Univeristy Hospitals Bristol patient meets another person with same incredibly rare condition for the first time
A man who has been treated for an incredibly rare vascular
condition at the Bristol Eye Hospital (BEH) and Bristol
Royal Infirmary for most of his life has met another person with
the same condition, for the first time.
Dan Jeffries is one of the only people in the world with
Wyburn-Mason syndrome. This condition can cause a range of
different problems and has resulted in blindness in Dan's left eye.
He has been going to the BEH since he was a child, where he was
first diagnosed.
Since then he's been of great interest to clinicians and student
alike - it was a group of students completing their final exams at
the BEH who diagnosed Dan with another rare condition, Acromegaly.
This is where the body produces too much growth
hormone, leading to the excess growth of body tissues
over time.
In an amazing turn of events, Dan was contacted by another
person with Wyburn-Mason syndrome. Donna, from America, found Dan
through searching for their condition on Youtube. She sent him a
message asking whether he'd like to meet up, as she'd
never met anyone else with the condition and would be in London
from July.
The pair met up this weekend and made a video to mark the
occasion, which can be viewed here.
There has only been 30 recorded case of Wyburn-Mason syndrome in
the past 50 years.
Dan has written a book about living with the condition called
'Me, Myself and Eye', which features his experiences with the
Bristol Eye Hospital, Bristol Royal Infirmary and its staff. Dan's
consultant, Andrew Levy, even wrote the foreword for the book.
If you would like to find out more about this condition, you can
visit the Me,
Myself & Eye website.
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