A Story from the other side
Mon 16 Jul 2012
Let me start off by introducing myself – I’m Molly, I live in the western suburbs of Sydney, I have mild haemophilia A with levels between 17-24%, none of which is all that unusual… except that I’m a female. My mum and dad were told before I was born that there was a 50% chance that I would be a carrier of the haemophilia gene – a little off the mark!
So, at the age of around 18 months, after my second lot of immunisations I could not walk and my nan said to my mum, “If I didn’t know better, I’d swear she has haemophilia and is having a bleed.”
After a few phone calls and lots of the usual unpleasant blood tests, mum and dad were told that I was not only a carrier, but I also had mild haemophilia! It could have been a lot worse as it could have been severe haemophilia like my dad! A good thing I don’t have severe haemophilia, as I don’t think my poor old dad could have taken it. He feels guilty enough as it is, and I see the sadness on his face every time I have to have factor, but to me it just gives us one more thing in common; haemophilia, World Wrestling Entertainment (WWE), and stupid comedy movies.
Having a dad with severe haemophilia has meant many hours at the hospital and occasionally missing out on going places planned with friends or family, and even a day or two off school. Dad is a big softie and although he has had home therapy for 32 years he still can’t bring himself to give me factor and can hardly even watch! I occasionally feel sorry for mum having to put up with our “owies” and having to put up with the haemophilia part too. Money can be a little tight at my place, as my dad can’t work since he is in a wheelchair and developed hepatitis C from blood products and has other health problems.
When people ask me what the worst thing about having haemophilia has been, I tell them the most frustrating thing is trying to convince doctors. I’m not talking about the doctors at the haemophilia centre, I mean doctors at places like medical centres, when you go in with the flu and they tell you to take aspirin for the headache. After many long, and in the end, useless fights, I’ve found it’s just best to smile sweetly and leave. What’s that saying, “Keep smiling, it confuses them.”
As for my day-to-day life I try to live as “normally” as anyone, but what is normal anyway? Sure, I’ll never wrestle for the WWE or become a Kung-Fu Master but other than that I can do most things. Apart from the occasional “Hey Molly, do you want to come ice skating with us today?”, I’m classed as normal.
I have done Rock Eisteddfod (where I danced on a fractured ankle, but that’s another story!), public speaking all over the western suburbs, and I have represented my school (primary) in netball and heaps more.
So sure, I have haemophilia, but I don’t let it stop me, and as far as my friends and I are concerned, I’m a normal teenage girl.