Real Stories

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Case study

Maryam, 37

Maryam

I have Glanzmann thrombasthenia (GT) which is a platelet bleeding disorder that affects both men and women. I was diagnosed as a baby after my family noticed that I was bruising easily.

I had lots of falls and bleeds as a young child, which meant lots of hospital stays. Both males and females face the same issues when they have GT but for females it becomes worse when they start their periods. I remember my first period when I was 12 years old, as the week progressed the bleeding became so heavy that I was leaving puddles of blood wherever I sat or slept. I was admitted to hospital for a whole month as I had lost a lot of blood and was extremely anaemic. I was given several blood transfusions and started on iron tablets as well as the contraceptive pill (to try and help with my heavy periods).

My parents were told that in the future, pregnancy and birth would be very difficult for me as it would be life threatening. Due to my bleeding disorder and the fact that I was on the pill I wasn’t seen as marriage material so there were never any marriage proposals and if there were any they would lose interest when they learnt that I had GT.

Despite all this in 2010 I met someone who saw and accepted me for the person I am. He saw beyond my bleeding disorder and accepted me for who I am. The big question was could I get pregnant and would I be able to stop taking the pill? My haematologist was brilliant and very reassuring and suggested I stop taking the pill and we would deal with whatever happened afterwards. To my surprise and delight I developed a normal menstrual cycle and my periods were not heavy at all, plus they only lasted seven days. I surprised everyone by finding out I was pregnant in May 2012. Even with all the concerns and fears around me I remained positive and our beautiful little boy was born in January 2013. I believe life with GT is what you make it to be and I don’t let me bleeding disorder hold me back anymore.

Case study

Nicola, 44

Nicola

I have haemophilia; yes haemophilia, the bleeding disorder that people think only affects men.  I was diagnosed when I was seven years old. My dad has haemophilia, so there was a chance I would be a carrier.

I had an accident at school and got a haematoma on my eye, where I had fallen into the chairs. As my dad was under the haemophilia centre my mum & dad took me there to show the Dr, and ask them to test me for haemophilia, because of the haematoma and other bruising I kept getting. The Consultant was reluctant to test me, explaining to my parents that because I'm female I wouldn't be affected with Haemophilia, if anything I would be a carrier, they eventually agreed to test me, and that is when I found out I had mild haemophilia. At the time I was only the third female known to have haemophilia.

As I’ve got older my symptoms have got worse. I struggle with my bruising in particular; I bruise at the slightest knock or bang, for example, when you brush the kitchen table when serving dinner. I even have bruises and don't know how I have got them. I also had severe bruising and bleeding through my breast cancer surgery, which was a very distressing time for my family and me and really knocked my body confidence, the added problem of a bleeding disorder did make it a little more complicated, only because my factor VIII levels fluctuate quite a bit.

Both my children have haemophilia, even my daughter, who also has a storage platelet disorder. I want my children to live a normal life as possible just bearing in mind to take care because of their bleeding disorders, however, as a parent you do worry, Its only natural, and now I know how my mum felt, especially when I see the bruising my children suffer with.

When my daughter was just 6 weeks old I was accused of child abuse as she was covered in bruises. This has probably been the worst thing about having a bleeding disorder, every time she cried her forehead would get little bruises and the GP referred us to the local hospital. At the time people were so ignorant and thought I was lying because “only men have haemophilia”. The hospital insisted my daughter didn't have a bleeding disorder, and thankfully the specialist hospital stepped in and took over her care, where they did tests and she also has it, as well as storage pool disorder.

Now, as a family, we take haemophilia as it comes and don’t let it get us down, even with the bruises. In fact, we like to explain to people about bleeding disorders when they ask why we’re so bruised, it's important for people and professionals to understand the issues surrounding bleeding disorders and not to assume something untoward is happening or going on, be understanding, investigate even if you think "it couldn't be" as not everything is text book reading, we're all individuals and all different.

?Talking Red is a fantastic way to get people to understand bleeding disorders in women both for the public and for doctors and nurses who might never have looked after someone with a bleeding disorder before, we still see some professionals who are shocked that me and my daughter are affected with haemophilia, and even now it can still complicate things, but at least they are aware.

Case study

Robyn, 16

Robyn

I have type 3 Von Willebrands, I was diagnosed at about 3 years old after having a prolonged bleed from biting my tongue. At first I was misdiagnosed but once the doctors did a clotting test it was evident that I had Von Willebrands. I am very fortunate that my condition is well managed by the compassionate team at the haemophilia centre in St Thomas' hospital. As a result of bleeds into my joints I have some minor mobility issues, therefore I have to be diligent not to over stress my joints, but I don't let this hold me back.