Last month it was Canada, next week it’s Belgrade and yesterday it was Cambridge. OK, not quite as far away as the rest, but what an amazing setting for the Cambridge Rare Disease Network conference .
Dan JeffriesAcromegaly, Advocacy, cambridge, CRDN, pituitary, Rare Disease, wyburn-mason syndrome3 Comments
Last month it was Canada, next week it’s Belgrade and yesterday it was Cambridge. OK, not quite as far away as the rest, but what an amazing setting for the Cambridge Rare Disease Network conference .
Every child faces challenges at school. The first obstacle for me to overcome contained two of the most terrifying syllables in the English language: rugby.
For the first time in the school’s four-hundred-year history, a boy was exempt from playing rugby: and that boy was me. Doctors at the Eye Hospital felt that the vascular activity around my eye and brain was a serious enough issue that I shouldn’t engage in any contact sport. The fear was that this arteriovenous malformation (or ‘the worms’ as our family called them) could become damaged if I took a hit, and potentially cause bleeding in the brain. I think there were also concerns that somehow the syndrome could pass over to the other eye, or in some way damage the eye. I didn’t really understand — I just knew I would never experience the joy of a sticking my head between another boy’s legs.
Every child faces challenges at school. The first obstacle for me to overcome contained two of the most terrifying syllables in the English language: rugby.
For the first time in the school’s four-hundred-year history, a boy was exempt from playing rugby: and that boy was me. Doctors at the Eye Hospital felt that the vascular activity around my eye and brain was a serious enough issue that I shouldn’t engage in any contact sport. The fear was that this arteriovenous malformation (or ‘the worms’ as our family called them) could become damaged if I took a hit, and potentially cause bleeding in the brain. I think there were also concerns that somehow the syndrome could pass over to the other eye, or in some way damage the eye. I didn’t really understand — I just knew I would never experience the joy of a sticking my head between another boy’s legs.