Recently I was asked to write about having von Willebrand’s disorder for a supplement called Your Blood which is soon to come out with an issue of The Independent. I was asked to write a paragraph but being me that was like trying to insert an elephant into a letter box.
I am going to publish on my blog what I wrote, as it’s a synopsis of my life with funny blood and I’ve not really put anything like that on here so far. The supplement that is being published contains a mere snippet as they only had a tiny space to fill. On here I’ll break it down into sections.
Your Blood – Part 1
When my mum and dad adopted me at the age of 6 weeks old in 1974, they thought they had been given a perfect little girl. At the age of 6 months when mum was at the GPs and mentioned that I had a bruise, she expected the doctor to say, oh yes that’s quite normal. She did not expect what actually happened next.
I was referred to the hospital to have blood tests done. Mum sat on a stool at the hospital with me on her knee while they pricked my ear with a needle and watched it bleed. After over an hour with me crying and mum worrying, they told her the fact it had not stopped bleeding was abnormal and that I would need more tests.
Mum was told by the Royal Manchester Children’s Hospital (RMCH) that her daughter had severe von Willebrand’s disease later that year. The next few years were particularly tricky. Learning to crawl, to walk and cutting then losing tiny teeth were all massive challenges. Mum and dad decided early on not to wrap me in cotton wool – though they were tempted, and some padding fashioned from socks with their toes cut off, filled with foam rubber, were popped over my knees when I began to crawl.
As a severe bleeder every time I bumped, tripped over or cut myself we had the pleasure of a trip to the hospital over 20 miles away. This could be many times a week. When I bled it wasn’t necessarily heavy but it oozed for hours without stopping until I had treatment. Treatment in the 70s consisted of cryo-precipitate, which had to be defrosted once we arrived at the hospital, and then loaded up into a 50ml syringe or into bags that were infused via one of my veins.
I remember a lot of my childhood as being spent in hospital and the nurses became part of our family and I felt at home there. I bruised very easily and had frequent nosebleeds and gum bleeds, all of which meant a trip to RMCH. I also had problems with internal bleeding into my joints – these were very painful and more disruptive for me as I had to rest until they got better. I also had to be pushed to school in a big blue stripy buggy which as a girl of 6 or 7 was not much fun. Generally though I lived my life as normally as possible given the amount of time I was on my way to, or from, or at hospital.
To be continued…