I’d like to share with you my experiences with ITP
I first started noticing unexplained bruising in the summer of 2010, but didn’t really think much of it. I also felt fatigued some of the time, but I put that down to a busy university schedule and exam stress.
I went to the doctors for an unrelated blood test in June of 2011 (I thought I may have had IBS). After 4 consecutive days of blood tests at the doctors with no explanation why I was transferred to Aintree University Hospital with a count of 27,000 and suspected ITP. I am lucky that my count has never been lower than this (since diagnosis that is!).
After 4 hours of blood tests and waiting around in the hospital I was finally diagnosed with ITP (then age 20). I also had a scan on my spleen and thankfully it was not enlarged.
Unfortunately, I had to cancel a holiday I was due to go on the following week because of the unpredictability of ITP and my haematologist did not want to risk me going abroad without being monitored for a while first. This was very disappointing as I had had a tough year and was really looking forward to getting away!
I also had a lot of trouble with the insurance company over the holiday – they refused to refund the money and claimed that I knew I had the condition before I booked the insurance, which was a complete lie. After several complaint letters courtesy of my dad I got near enough the full amount back. Just a warning to those thinking about holiday insurance – I wouldn’t not recommend the Post Office!
Since being diagnosed with ITP I have been going for blood tests at the hospital every 6-8 weeks and my count has been between 30-50,000 with no medication. What I find annoying about the condition is I have no idea why my count goes up, goes down or why it is so low in the first place! I do have one theory though. In about February of 2010 I had a really terrible stomach bug which lasted over 2 weeks. It seems since then I have picked up IBS related symptoms (hence the initial blood test) and the bruising started to appear. I have also become intolerant to maize. I have no idea how they are connected, but it seems a bit of a coincidence. I would have been very interested in taking part in the Food Intolerance Study but unfortunately could not attend!
Many things have come to light since being diagnosed with ITP. For example, in the past after having dental work, I used to bleed longer than ‘normal’ which I know now was because of my ITP. I also had an operation in January of this year, and it is scary to think that my count could have been god knows what whilst undergoing the operation!
I find I am always wondering what my count is, and when I get a new bruise or am fatigued, I worry that it must have gone down. I try not to think about it but it is quite hard not to!
I have tried my best to fundraise for the charity since being diagnosed, not only to raise funds but also to increase awareness. Not one person I know or have met since being diagnosed has ever heard of ITP so I think it is important to get it in the spotlight!
With only recently being diagnosed this is my story so far, any comments or feedback would be great