Never met someone with ITP

I have never met anyone with ITP before! I am hoping through this site I will meet people and make some new friends!

Of course you will! :laugh:

I have met people with ITP. My sister had it, and my friend's MIL has had it. I've known people throughout the years who have had acute cases. I have also met hundreds, if not thousands of people here over the past 16 years. Because of that, I have a hard time believing how rare it is. I've been surrounded by ITP for a long time!

There are a handful of people here that have been around for a long time, and I have developed personal relationships with them over the years. I would go so far as to call them friends. I used to think that people who developed relationships over the Internet were nuts. Not so - these people have been a lifeline for me a few times with various situations!

Welcome to pdsa! I was diagnosed dec 2012. I have a great support system ( friends, family, boyfriend), but sometimes it's helpful to talk to someone who has itp. I know that being on here has positively impacted my life. I hope it will do the same for you!

The people on this site have been an incredible help and support for me - I've learned a lot, and it enabled me to be able to take a much more active part in deciding what treatments I would go for. Even my doctors have really appreciated having an "educated" patient to discuss things with, especially when it came to a decision on splenectomy. I check back on the site regularly, even though I'm not on active treatment any more, just so I can see how everyone's doing and give some updates on the outcome of my splenectomy - I trawled the forum for other people's stories on that when I was deciding whether or not to do it, so want to give something back from my own experiences.

As regards meeting someone in person - I've only met one other person with ITP in the flesh - and she was sitting in the next chair in the transfusion ward, getting Rituximab whilst I was getting IVIg. Just to confuse the medical staff, we were both called Rachael/Rachel

Besides the great people here in my personal life I met a man who thanked me for doing the Rituximab study he did not qualify to partake. One of my nurses years ago her dad suffered from it. My sister-in-law's brother had an acute case when he was a child. Than my other sister-in-law was at work one day and a co-worker was covered in spots and bruises. First thought in her mind he looked like me when my counts were low. She told him about me and told him to see a doctor right away. Turns out he had just developed it.

My daughter has had a few blood tests where her platelets are lower than norm but has not been diagnosed. The few times the blood work came back low the doctor told her he would of never mentioned it except for the fact that she tells them about me and that is why she wants to know her platelet count.

So like Sandi I find it hard to believe that it is as rare as they say. According to statistics I should be the only one in my city to have it. I personally believe that if everyone had their platelet counts monitored they would find more and more people with lower than normal numbers. I wonder how many people have counts slightly below the normal that doctors just shrug off because they are not low enough to worry!

I have a tshirt that says 'Got Platelets?' and I've never gotten any ITP comments when I wear it. I always hope I'll run into someone who knows about ITP and notices the shirt.

I got the shirt at a second hand store, it is advertising a blood drive.
Erica

If I saw someone wearing that shirt, I wouldn't say anything if I didn't know them. Lots of people are more outgoing than I am though.

I would probably say Nice Shirt if I saw someone who was wearing it! Over the years as I age I've become more and more outgoing!

In Ohio we went to a meetup for dogs. The lady sitting next to us was fostering a dog. Well my friend ended up adopting the dog and we ended up becoming fb friends. It turns out her husband has itp. He has been in remission for three years and he's a homicide detective. The world is smaller than it seems.