ITP since i was four (new to the sight)

Hi,

I was diagnosed with ITP at the age of four and am now 25 and have never grown out of it like the DRs said i probably would have. I have never know another person who has ITP or who understands what it is like to go through which is why i have joined this sight. My parents have been fantastci along the way they did not let me miss out on too much in life i was lucky they did not wrap me up in cotton wool as much as they could have.
Growing up with ITP has been difficult for me, i have had several people throughout my life make comments like "there is nothing wrong with her" or "she is just a drama queen, everyone gets bruises" This is the reason that i am ashamed of having ITP and do not discuss my disorder with anyone other than my fiance, parents and sisters. I have felt isolated not being able to discuss my symptoms with another person going through ITP and i wish there was a way to change this for future generations.

I just wanted to see if other people felt the same way about things and possibly to make a friend who is going through ITP to be able to feel understood for a change!

thank you,
Keira

Being diagnosed as an older person, I've never felt the isolation you describe. This site is very helpful for that, however--people are willing to listen to you and to share their own experiences.

How do you treat your ITP?

Hello, Keira.
I was also diagnosed as an older person, at 58 I think. So I haven't faced the same challenges of having periods or thinking about childbearing with low counts that you may have.

However, I do understand the feeling that no one I know (except for those here) "gets" ITP. The attitude they project is, "Well, it's not cancer and you're not hemorrhaging on my furniture ... So get over yourself already." But, I think it's that way with any uncommon disease, or one that's not imminently fatal. It's not you; it's them.

There are younger women here who you may identify with a little better. Hopefully, one or more will pop in soon.

Hi Keira. Welcome to the site!

I was diagnosed at 35 and didn't feel isolation either. I didn't really want people to know other than family and a few close friends because I didn't want to be treated differently and I didn't want pity. I did however, feel the need for emotional support during crazy Prednisone times and I got all I needed right here.

The people here are like family; some have been here since the 90's. You can pretty much discuss anything and get reliable, helpful answers.

How are your counts? Are you treating?