This is the second part of the information I sent to the Independent for their Your Blood supplement.
It is being published tomorrow Friday 2 September – I’ll put the link on here in due course.
Your Blood – Part 2
The next major challenge was, unsurprisingly, when my periods started. This was a moment my mum had dreaded and it lived up to her expectations. I bled for weeks each time with very little break in between periods. I was treated often – by now the treatment was injections of clotting factor manufactured from many blood donations – and also spent a good deal of time as an in-patient having blood transfusions. My teenage years were interesting to say the least.
I was referred to an enthusiastic gynaecologist at the age of around 14 to see if my periods were so bad because of a gynae problem, but no, it was just my bleeding disorder. He did however experiment with the hormone pill until we found a high enough dose to control the bleeding in some way that meant I didn’t have to go to hospital multiple times every period and could try and resume a normal teenage life.
My other issue during this time was that I had a number of spontaneous internal bleeds that required investigation and aggressive treatment and meant a good deal more time in hospital and off school. These were bleeds that were not caused by anything specific and that I only knew about because of the extreme pain and swelling. However I managed still to get both my GCSEs and my A levels and went off to university feeling really grown up.
By this time I had taught myself how to self administer the injections. This changed my life totally because we no longer needed to be within a safe distance of a hospital but I could take my treatment with me and go anywhere – I really felt like the world was my oyster!
To be continued …