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TOPIC: Transitioning Into adulthood

Transitioning Into adulthood 2 months 6 days ago #64898

  • Rors
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I was diagnosed when I was 8 and having recently turned 18, I’m at a bit of loss as how to move on, currently I have to make weekly visits to a children’s hospital. I know how to be a kid and teen with a chronic illness but how do I be an adult with a chronic illness. How do I go to college, is it time to move on from Children’s?

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Transitioning Into adulthood 2 months 6 days ago #64901

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Tell us more about your situation. How are your counts? Are you treating? Why do you go to the hospital weekly? How much do you really know about ITP?

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Transitioning Into adulthood 2 months 4 days ago #64929

  • momto3boys
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Hi there,
I was also diagnosed around age 8 and I'm now 43 (!) so it's definitely possible to transition into adulthood and lead a normal life with college, travel, and all of the usual adult things.

We'd have to know more about your situation to give you specific advice, but I will agree with Sandi that the best thing that anyone with ITP can do is to research and learn. You need to drive the doctors, so that they aren't always driving you. There are lots of hematologist/oncologists out there with outdated info on ITP, terrible ideas about ITP treatment, and all kinds of different philosophies. You have to watch your back and not jump blindly into any particular treatment without full knowledge. With ITP the treatments are often worse than the condition. Good luck and this forum is a great place to ask questions.
The following user(s) said Thank You: maria3132

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Transitioning Into adulthood 2 months 2 days ago #64960

  • Rors
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Hi sandy,
My counts untreated stay under 10k. I have been on Eltrombopag 75mg since I was around 12 off and on. I started taking it as a part of a study. My counts tend to tank quite frequently, and I tend to have quite a few symptoms, so I have been doing weekly blood counts since I was diagnosed. I had my
spleen removed almost 2 months ago, and it has been deemed a failure. I like to think I know a lot about ITP, but most of my information comes from my doctors. Thank you for your help

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Transitioning Into adulthood 2 months 2 days ago #64961

  • Rors
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Thank you. It’s good to hear from someone who has lived through what I’m currently living.

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Transitioning Into adulthood 2 months 2 days ago #64962

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hey Rors, since you're an adult now, move yourself up to the adult section and hang around with us. It sounds like you're an old pro since you've been doing this for so long, but there are still things to learn, I'm sure!

I believe that you can handle this on your own and you can go away to college and lead a normal life. How are your counts when you treat?

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