Since I'm reaching another turning point with my ITP, I thought I'd contribute my story so far to this blog. My name is Caitlin, I'm 21 and a student from sunny
Wales, . My ITP story goes back to the spring of 2007, when I was 15. My first symptoms were petechiae on my arms and chest, but I put it down to getting too hot in rehearsals for a musical I was in. I also trained 4 nights a week in karate and competed at a national level, so bruises on my arms and legs were normal to me, I didn't even notice them! UK
That little pinprick rash soon turned into lots of big angry looking red spots all down my arms and across my back that didn't disappear when my Mum pressed a glass to them- cue panic! I was at the Dr's office that very day being poked and questioned and having blood taken, but feeling absolutely fine. I carried on with my day, went to my Saturday job as a waitress, and was looking forward to a party for a friends 16th birthday.
Needless to say, my night didn't go as planned. My Dad picked me up from work an hour into my shift, I'd had to cancel on my friend and go straight to hospital for a whole load of tests. By midnight, I had the diagnosis- "You have ITP. It means your platelet count is low, so you bleed easily." My Dad lost a sister to leukaemia when she was a toddler, so my diagnosis was something of a relief to him, as, unhelpfully, all the phonecall had said was "Your daughter's blood counts are very abnormal." However, I was terrified. I knew what a platelet was, but getting a major diagnosis of a disease I'd never heard of at 15 years old was horrible.
Being a nosy, scientific type, I threw myself at the internet and tried to research the best I could, but all that achieved was convincing me that I was going to die of a brain bleed! Then we found the ITP Support Association, a
charity who send out factsheets and newsletters to patients and families. I remember they had a leaflet for kids and teenagers that helped me with a lot of basic information and reassurance that though the condition is rare and scary sounding, it was by no means a death sentence. I also got some cute fluffy toy platelets! UK
For that first 6 months, as I was still a child, we adopted a watch and wait approach, and hoped it would sort itself out, which was fine for the most part. I've never been bothered by needles, and apart from a huge nosebleed on an exam paper (oops!) I didn't have too much trouble and passed all my exams with flying colours. However, my ITP soon became more of a problem. With counts below 10k I was always tired, and had huge bruises, and I missed school a few times because my nosebleeds were so bad. It was around then I started on high dose Prednisolone. I'd taken it before for asthma, but never had it been so much (70mg, for those in the know) Teenagers can be cruel, and as if the huge weight gain didn't get me enough grief, my bruised arms and strange behaviour (the side effects manifested as mood swings, depression and sleep disruption) attracted the kind of whispers, pointing, glances and questions no one ever wants, never mind a 16 year old girl. No one wants to be asked "Is everything ok at home?" when you know full well you have the most wonderful family in the world who would never ever hurt you, but even when I'd tried to explain the condition people didn't believe me, and they talked. I found out who my friends were pretty quickly. That was some of the toughest stuff to deal with for me, even to this day.
It became clear that I couldn't stay on the Prednisolone forever, even though it did help my counts. I had Rituximab treatment in January 2008. My counts began to climb after only a couple of weeks, and I was declared in remission in June 2008. I was still under the watchful eye of my haematologist, back in and out for check ups for most of the rest of my school life, but with counts of 200k+ all the time, it was hardly a chore. I finished high school in May 2009, got good grades and spent the summer saving money and hanging out with my friends before heading to university in September, just as any 18 year old should! But was this the end of my ITP story? On the advice of Greta (I'm a terrible editor and have a long story!) *tune in next time* to see what happened next!