Joy's Story


I was born in 1944 and named for the great Joy that my parents were feeling.

Five years earlier they had lost their first son to what doctors put down to haemophilia. He died as a result of having undergone a splenectomy – supposedly, at that time, the cure all to severe bleeding problems!! He was three months short of his third birthday and my mother was five months into her second pregnancy. Sadly this second son died at 10 months of a suspected brain haemorrhage after my mother found him dead in his pram.

Believing that a daughter would be spared the bleeding problems that had already claimed the lives of their two sons, my parents were ecstatic when I was born – hence my name.

But it quickly became apparent that all was not entirely well as I bruised with the same ease of my brothers. At two I fell and split my lip open – a nightmare again for my parents. Nose bleeds left me hospitalised frequently and missed schooling became a problem. Blood transfusions were never given – just lots of nose packing and a hospital stay for around a week at a time with permanent iron tablets. It was the same story when I needed a tooth extraction.

But no answers were ever forthcoming from doctors.

My father used to tell me that I would be ok when I reached my teens. It was only then that I realised he was convinced that menstruation would perhaps solve my problems, believing, as he did, that the nose bleeds were ‘nature’s way’ of relieving blood pressure.

That may sound like something out of the archives — remember we are talking about the 1950s here. But, strange as it may seem, the gushing nose bleeds did stop at around the same time as menstruation. Coincidence? I don’t know, but while my periods were heavy, they were by no means ever life-threatening, as I know many are for GT patients.

I asked for further testing when I was 18 and was sent to a regional haematology department. They diagnosed von Willebrand’s disease – at last I had a name for the disorder which I found unable to explain to those who wanted to know about my abnormal bruising and bleeding.

After my first marriage in 1965 I moved to Oxford – where it turned out the leading expert on GT was based. It was he who rediagnosed my condition and it was he who threw his hands in the air when, not long after, I announced I was pregnant. He may have been the expert but even he had never dealt with pregnancy in a GT patient. Thankfully with lots of planning and co-oeration between him and my gynaecologist I gave birth to an eight-and-a-half-pound baby boy (much to my parents’ apprehension as they still believed that a boy had less of a chance of survival than a girl).

However, in spite of transfusions of whole blood before labour and platelets during, within an hour I was rushed into intensive care with a major haemorrhage and my son had turned black and was being transfused. Neo-natal thrombocytopenic purpura was diagnosed, thought to be a result of him developing antibodies to the blood transfusion I had immediately prior to his birth. More platelets for both of us and we were stabilised.

Happily he continued to thrive and had no further problems. I had another bleeding episode with my first period and was hospitalised for another week.

Fast forward 18 years and I had to have a D&C (dilation and curettage) but within a few weeks I haemorrhaged and wouldn’t stop. After over 80 packs of whole blood and platelets I still continued to bleed until one of the registrars decided I may have developed antibodies. HLA matched platelets were sourced and provided the answer to the problem.

A hysterectomy a couple of years later was less of a problem thanks to HLA matched platelets being sourced prior to the surgery. All this, of course, is pre Novoseven time.

After childbirth I immediately went on to high oestrogen dose birth control pills which seemed to do the trick so far as periods were concerned and after my hysterectomy I went onto hormone replacement therapy. This too seemed to help alleviate some of the bleeding and bruising problems I had previously experienced.
After 21 years on HRT I came off that and my problems have mainly been the result of very low haemoglobin (suspected GI bleeds) plus minor irritations of lengthy lip and tooth bleeding episodes and the bruising. Novoseven was first tried on me for a wisdom tooth extraction around 17 years ago and has since worked well for me, although it has not been put to a real test and hopefully it will never need to be.

I know that I have been very lucky — lucky my GT is not as a severe as many; lucky to have had the UK National Health Service, which I had not really appreciated until I moved to Spain and then Portugal. It was that which brought me back to my amazing UK consultants and blood transfusion service. And, ironically, since moving from Scotland back to England, my current Consultant is now that very Registrar who perhaps saved my life 35 years ago.


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