This song has been my fight song, since it came out, as for so many other ITP lers that I have met on FB , there are several groups.
Believe me this song is played more than once a day in this house, sometimes on the repeat loop. But it helps!
The story of Katie, she created this video:
Many people will know September as Childhood Cancer Awareness Month. What people may not know, is that it is also ITP Awareness Month.
My name is Katie Meloy, I am 21 years old. Early this year I was diagnosed with a rare blood, and auto-immune disorder called ITP (Idiopathic Thrombocytopenic Purpura).
It is a condition where, for unknown reasons, my antibodies attack my own healthy platelets, and my body can not produce them fast enough to replace them. A normal platelet count as you may already know is between 150,000 and 400,000. When I was diagnosed my platelet count was only 2,000 and has since been 0.
When a persons platelet count drops below 30,000 there is a increased risk of a serious bleeding event, such as an internal bleed, and haemorrhage. At least one child dies every year in the UK from ITP related causes and it is estimated that 90,000 adults suffer from Chronic ITP in Europe and the United States.
Unfortunately there is no cure for ITP, only treatments including steroids (Prednisolone), chemotherapy drugs (Rituximab) and some other auto immune suppressant drugs. Different treatments work for different people and some people find it hard to find a treatment that works for them at all.
When a treatment works it is very hard to tell how long the treatment will last. Once counts have become ‘stable’ we are in remission. There is a 80% chance that within the first 18months after a successful treatment that a person will relapse.
Thankfully, after suffering chemical meningitis, horrific nose bleeds resulting in my nose being cauterised and countless hospital appointments and admittance’s; I finally have stable counts and have had for 6 months now.
September is ITP awareness month, and ITP awareness day is the 25th September. Since being diagnosed I have made it my mission to share awareness and raise money for the disorder.
I contacted people with ITP from all around the world to come together and help with this awarness video. Most people with ITP have never met another sufferer, so for most, this was a opportunity to share experiences and stories. I was truly overwhelmed by the positive response I got from everyone and I can not thank everyone enough for getting involved!
It would be brilliant if you could help us out by sharing this video or donating online. All money raised helps fund more research into better treatments and hopefully one day, A CURE!
Thank you for taking the time to watch through the video. Please feel free to get in touch, share and comment!
A SPECIAL THANK YOU:
I want to thank everyone that has taken part in helping me create this video and everyone that has shown interest in sharing both knowledge and awareness.
Thanks a million, Katie x
I live with ITP for 10+ years, but was finally “officially” diagnosed with it about 2 years ago. This is why I wear my medical bracelet everyday. It is a lonely journey, because first you have to find a Doctor who knows about it (which I haven’t) and is willing to help you. Then you have to constantly explain to people what you are going through and they can’t relate. Many visits to the “vampire” as I call them, because of the amounts of blood they always suck out of me, to get a CBC (complete blood count). Just had one done the other day. At the moment I get it about every three months. I was at one point getting blood drawn every week, then every two weeks. Then went into remission and saw the vampire only once a year. Now I am back to very regular visits.
Just a little visual about what the cause of ITP is understood to be at the moment:
It did get a little easier with the internet to get the possibility to find information or the latest research that is done. And to get picked up by online friends in the community, when you are one the way down on your roller coaster ride.
So here is to all the ITP lers out there!
STAY STRONG! And wear the color PURPLE proud!
Purple has been my favorite color long before I even ever heard about ITP. I guess for a reason.
Thank you for your Support!
♥ wear your purple ♥