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Adults With ITP
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Telling Family and Friends
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Telling Family and Friends 3 years 7 months ago #67853

  • PaulaKO
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I’m new to ITP, less than a week with my diagnosis. I am wondering how or when you decided to tell your family and friends. I am not having many symptoms and kind of accidentally found that my numbers were falling.

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Telling Family and Friends 3 years 7 months ago #67855

  • CindyL
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Hi Paula, welcome.
If I remember correctly, I told my family right after diagnosis that I had something called "ITP". I never really hid it from anyone.

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Telling Family and Friends 3 years 7 months ago #67863

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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I guess when I tell folks about my ITP I describe it as an auto immune disease like Rheumatoid Arthritis, but affects platelets. That way they know right off the bat ITP is not contagious.

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Telling Family and Friends 3 years 7 months ago #67866

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Would have been difficult for me to hide it from anyone I was covered in bruises. I told people as soon as I was diagnosed.

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Telling Family and Friends 3 years 6 months ago #68025

  • PaulaKO
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Thank you!

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Telling Family and Friends 3 years 6 months ago #68026

  • PaulaKO
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Good point!

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Telling Family and Friends 3 years 5 months ago #68165

  • NK18
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Hope you have told your family already:) And I HOPE that your platelets count went all the way back to normal or stopped in the "safe" zone. Just wan to share from my experience, expect my husband and kids nobody really remembers that I have ITP. And they forget sometimes as well.:) It's been year and a half and I have not had any treatments, except Promacta before surgery.

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Telling Family and Friends 3 years 5 months ago #68221

  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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NK, was it a 50mg dose that brought your counts up to 80 before surgery?

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Adults With ITP
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Telling Family and Friends

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