Maryam’s story

I’m a 37-year-old woman from the Muslim Pakistani community in the West Midlands. I was diagnosed with Glanzmann’s Thrombasthenia (GT), a platelet bleeding disorder, as a baby, after my family noticed that I was bruising easily and our GP referred me to Birmingham Children’s Hospital.

Growing up, I experienced the same things as other children – bumps, falls, and cuts that needed stitches. Because I have GT, my bruises were more pronounced and I needed time off school and bed rest to recover from internal bleeds around my joints.

Losing my milk teeth, and knee bleeds meant lots of hospital stays, and my family and teachers ‘wrapped me in cotton wool’ to try to keep me bruise-free and out of hospital. As a girl, puberty brought with it the difficulties of dealing with menstrual bleeding each month. My first period arrived when I was 12, a week after starting a new school year, and became so heavy that I left puddles of blood wherever I sat or slept.

I spent a month in hospital receiving blood transfusions to replenish lost blood and iron tablets for the resulting anaemia.

My parents were faced with two treatment options, either monthly blood transfusions in hospital, or starting me on the combined contraceptive pill.

I was the eldest of four children; my dad worked in a factory, my mum didn’t speak English and was running a busy extended family home, so my parents decided the pill would be best: back then it wasn’t common practice to involve the child in such a significant decision.

My parents were also told that pregnancy and childbirth would be very difficult and potentially life threatening for me.

In the Asian community, once a couple get married the pressure is on for them to have a baby, so having GT meant I wasn’t seen as ‘marriage material’. Who would want their son to marry someone who was taking the pill and who could potentially die in childbirth?

My medical condition was no secret: all my relatives in the UK, Pakistan, and our wider community knew about it. Looking back, I don’t mind that they knew; it was the misguided views and assumptions that were made about it that caused the heartache .

Rather than making the effort to understand the reality of a medical condition, it’s easier for people to jump to the conclusion that it’s something debilitating and crippling.

Once people know, all they can see is the medical condition – they don’t see you for the person you are. Growing up, I often heard comments like ‘Oh, she’s the one who’s ill’, ‘She has the condition’ and worse. Wherever you go, whether it’s a wedding, funeral or any other family gathering, people look at you and you know they’re talking about you. The more you hear these comments, the more you start to believe them to be true.

I left school at the age of 16 with little confidence or self-esteem, frightened of doing anything because of GT and poor GCSE grades. Despite this, my wonderful dad really pushed and encouraged me to succeed and not let my bleeding disorder get in the way. He made sure I went to college, learned to drive and became an independent woman.

I completed a two-year childcare course at college and then started working, which built my confidence to further my education and career. I graduated as a speech and language therapist in 2002 and I currently work both in the NHS and privately.

In 2010, I met someone who sees beyond my bleeding disorder, and we got married in July 2011. Many issues arose leading up to the wedding, the biggest being the fact that I had been on the pill for 21 years. Could I risk stopping taking it? My haematologist was brilliant, supporting me to come off the pill, and reassuring me that we would deal with whatever happened afterwards.

To my surprise and delight I developed a normal menstrual cycle – my periods weren’t heavy at all and lasted seven days. I surprised everyone by finding out I was pregnant in May 2012, but this led to being surrounded by fear and concern about whether I would survive the birth. I managed to stay positive, and our beautiful little boy was born in January 2013.

Life with GT isn’t easy as it’s always there; I know it won’t ever go away. My gums sometimes bleed when I brush my teeth, I get nosebleeds, internal joint bleeds, and bruises from bumping into things. However, I’ve learned to live with it and not let it get in the way.

I’ve achieved things that seemed completely impossible 10 years ago. I’ve had wisdom teeth extracted, come off the pill and developed a normal menstrual cycle, had an emergency caesarean, and I recently broke a bone in my foot which, to my delight, didn’t require a platelet transfusion.

I manage my bleeds at home using basic first aid techniques, and tranexamic acid if I need it, and so visits to my haemophilia centre are now quite rare.

While it’s taken me a long time to learn this lesson, life with GT really is what you make it. For me personally, it’s my faith in God that has got me to where I am, and motivates me to rise above my bleeding disorder.

You can live life in constant fear and worry about what will happen if you do something, or you can put GT on the back burner, live life one day at a time, and try to make the most of every moment.