this is my first post

Hello. I am a little unfamiliar with this sharing thing. I have been struggling with ITP for almost 9 years now. I have never talked to anyone else who has dealt with this. Family, friends and even doctors eyes glaze over when I try to explain what ITP is and what it's like living with a chronic illness. The vagueness of it. Plus no movie has been made about it so there is no connection.
Anyway, I just started Promacta last Thursday. I have had a splenectomy, several sessions of IVIGg, lots of wait&see, inexplicable ups and downs, and most recently tried Rituxomab which worked for a month and then splat. I see my Hematologist at Bellevue Hospital here in NY next week. So we'll see...

You have come to the right place, some people here have had ITP for many years. We are non judgemental and can help you with many questions you have - however trivial they may seem.
Welcome to the group.

Welcome to our patch.
I am from Australia & have had ITP 10 years. The PDSA site & particularly the forum has been a God send. Just knowing others who understand, who are struggling with similar issues & who make me laugh has been the biggest positive in my journey with ITP. The combined knowledge & friendliness has encouraged me all that time. You are not on your own.
Best wishes from Down Under,
mj

Hi there!

Welcome! I was diagnosed a year ago. My doc thinks I have had it for several years. There have been ups and downs for me as well. I really pretty much ignore it as best I can. It is just how I deal with it most of the time. There are people here that know so much about this disorder that is my first stop for any information that I may require.

I really like the idea of "ITP" the movie! Maybe it should be a musical! I will have to work on that one a bit!

You are now with friends that understand. Keep the faith!

Jeffrey

Hey, welcome! I've been living with ITP only since August, but I understand where you're coming from. It's hard having your life revolve around a number. I'm seeing my hematologist this week as well. Here's to safe counts!

I really like the idea of an ITP movie too, maybe someday?

-Kristina

Welcome to the I know more than most doctors clubs! I've watched many of people glaze over when I speak. Now I just impress them with my spelling "Immune Thrombocytopenic Purpura". Want to see a glaze spell that fast.

I've had ITP since my kids were little I have forgotten what year I was diagnosed (pretty sad eh). Yes I said eh I am Canadian after all! I have even seen my fair share of doctors who have no idea what ITP is and have had many panic when I've shown up in emergency with single digits.


The one place that helped me to learn and to handle having ITP was this site. So don't be afraid to vent, ask questions anything! I find most of the time there will be someone here who completely understands or is going through a similar event or feeling.

Theme song for the movie the old twilight tv show music!

Wow! I am a little teary-eyed reading these responses. I had no idea how alone I felt until just now. This is what people mean when they talks about 'the support of community'. Wish I did this years ago when I was going through my deepest bouts of anxiety and depression. This is so cool.

good luck Kristina...the good ole CBC numbers game.

Thanks again for the welcome everybody. I was having a difficult afternoon until I remembered to check for responses and poof! much better.

Btw, has anyone else been getting bad headaches from Promacta? They are manageable but just curious.

Welcome to the site! I was diagnosed with ITP almost a year ago. For me I have a great support group of friends and family but it's hard for someone to truly understand what it's like to have itp unless you talk to someone with it.you can come on here anytime and there is always someone that is going through or has gone through what you are going through. Sometimes we just need some inspiration or laughs and those are here too! I honestly do not know where I would be without PDSA. It would be in a much darker place.

Winifred is right, there are many on here who know more that most doctors.
Because of being on here and hearing others stories I have changed my whole outlook on disorder and ended up seeking out a specialist on itp who was willing to try other treatments besides splenectomy. The people on here have encouraged me to be my own advocate which is a must!

I highly recommend going to a pdsa conference. I went to the one this year. I learned a lot and it was nice to be face to face with other people who were coping with itp.

I am currently on Promacta. About once a day I will get a sharp pain in my head for a few seconds and then it will be gone. What types of headaches are you having? I was on Nplate prior to this and was having achiness all over my body so to me Promacta is much better.

There are about 4 of us who started Promacta around the same time and we have a board called counts with Promacta. It may be good to post about headaches to see if anyone else is having them and if so how they are coping with them!

I'm totally down for making a musical about itp. I think jack has made up some songs about it actually, so there's a start.

Again welcome to PDSA!
Valerie

Good Evening!

If we do "ITP" the musical Harry Conick Jr. should probably play me and if it is the movie, Brad Pitt would be the obvious choice! Just a few observations! Just sayin......

Jeff