Hi 
I'm Louise and I suffer from a very rare disease called a facial AVM. About 12 years ago I started getting a pulse in my face and I had a coil inserted to slow the blood flow down.  An AVM (arterial venous malformation) is usually something you are born with, I had a very faint line down my forehead, nose and lip which faded.  It is a malformation of veins and capillaries and means blood flows from arteries to veins without slowing through capillaries.  This can eventually lead to massive arterial bleeds that are life threatening.  This started happening to me just under 2 years ago.  Unfortunately treatment in the UK is not available and I have started travelling to Little Rock, Arkansas for life saving operations.  So far I've been there twice in the last year and I'm due out again soon.  The treatment is amazing but the cost is horrendous. I'm trying to raise money to help with treatment costs.  (First bill was $87,000 excluding fares and accommodation!) I have a way to go with my treatment as the onyx which was used to excess in this country to try and stem the bleeds has hampered healing despite most of it being removed in America. The treatment is going well but if the entire AVM, which had spread to sinus, nose, cheek, ophthalmic artery is not all removed it will grow back aggresively.  It is apparently more difficult to treat than facial cancer.  My surgeon in America is one of the best in the world for treating facials AVM's.