Skip to content
left end
left end
right end

08 August 2016

Univeristy Hospitals Bristol patient meets another person with same incredibly rare condition for the first time

Dan Jeffries and Donna meet

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.