Shardae
My name is Shardae, I am from the UK and stumbled across your site.
I am 24 and have inherited Factor V Leiden from my mother. Luckily for me I was diagnosed from the age of 16 and as yet have had no further complications or DVTs as a result but I am aware that it may happen.
The story really lies with my mum.
When I was 8 years old my mum was having severe headaches whereby she couldn't have any lights or noise at all.
She went to her local GP and was told it was just a "migraine" this went on for a period of time ( how long I don't know as I was young at the time) but I do know it was numerous occasions my mum was sent away from the doctors and told to take Paracetomal.
Eventually she was rushed into hospital and was told she had incafelitas( not sure if that is the correct spelling!)
Im not sure of the time scales in between but when I was 9 years old my mum was told she had cysts on her ovaries and needed an operation, she went in for the operation and came home and was fine for a week then one day I came home from school to be told my mum had been rushed back into hospital and was in a critical condition so I had to stay with my nan for a week.
It turned out she had suffered a blood clot on the brain which had stated in her leg as a result of the earlier operation and they said it was likely that the hospital admittance the year before was also related.
She spent many months in hospital and I was told at a later date that her heart had stopped beating during the brain operation but they luckily managed to revive her.
As a result of the blood clot she suffered long term brain damage and long term memory loss.
It took years for her to Re-learn everything, she had to start from scratch leaning to walk, talk and perform every day basic tasks.
I spent the rest of my childhood living with my father who had split from my mother years before.
It took about 11 years for her to fully recover and to this day she still suffers from memory loss and there are still parts of her life which are completely blank and she doesn't recall at all.
It changed her personality and she has never been nor will ever be the same person she was before.
After all this she was diagnosed with having Factor V Leiden and we were told that it was hereditary so myself and my brother were tested as soon as we were 16 and have both inherited it. Since then we have discovered that most of the females on my maternal side of the family also have the condition and my aunty has also suffered 2 heart attacks before the age of 50 as a result.
We all blame the doctors for ignoring the early signs of my mums blood clot and if it had been diagnosed correctly the first time then the agony my family have been through could have been avoided.
My mum is now on high doses or Warfarin for the rest of her life as is my aunty.
I too have suffered affects of the condition as I had a miscarriage when I was 18 but I was not told at the time it could have been caused by Thrombophilia I since found that out myself.
I do worry about it sometimes and fear something more serious could happen to me but until now have not really been fully informed about it or what I can do to avoid blood clots, so I think your site is a very good idea and I had no idea that there was even support out there.
Kind regards
Shardae
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