Olly Mayne

IOli Mayne CV photo was born in 1971, when there was even less knowledge of the syndrome than there is now.  Being half-English/ half-German, and with a well-connected dentist for a grandfather, I was taken for tests in both the UK and Germany (which, I’m told, included me being paraded in a lecture theatre in front of a number of doctors – even then I was a ‘star’!), before being diagnosed with the syndrome, my deformed chest, which was large and out of proportion in size to the rest of my body, being the most obvious sign of the condition.  However, after some tough early times for my parents (in terms of eating, ice cream proved to be my saviour!), the rest of my body began to ‘catch up’, and I gradually started to develop into a normal young boy/ teenager – going to school as usual, playing sports and music, going on holiday, socialising etc.

 

Fast forward to the present, and having ignored Jeune’s for most of my life, the time recently came for me and my fiance to re-visit the syndrome, in terms of the potential impact on future offspring, which led to Jeune’s being confirmed by a geneticist in 2013.  However, with middle-age impending, I am delighted to say that, even though my family has a history of heart disease (which I presume can’t be helpful in such a situation)  my life is continuing pretty much as normal.  Yes, I have some slightly unusual physical characteristics which may or may not be Jeunes-related, such as large-jointed fingers (or ‘funny fingers’, as my god-daughter used to say!), flat feet, hammer big toes, and a number of birthmarks (including one on the side of my head which I’m sure will prove to be a nightmare as and when I go bald!). On the other hand, my chest issues have long since seemed to have rectified themselves (any remaining ‘stomach’ being probably due as much to over-ingestion of fine beer than anything else!), and health-wise, the general prognosis seems to be positive. Only recently, I had to go to hospital for what turned out to be a chest and lung infection, however chest x-rays and associated tests taken at the time all came back without any Jeunes-related issues.

 

Whether I have just been mighty lucky, or have only a very mild case of the syndrome, it seems that Jeune’s syndrome is something which, so far, has not impinged greatly on my everyday life.  Hopefully I will be able to say the same thing for many years to come.