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TOPIC: Telling Family and Friends

Telling Family and Friends 10 months 3 weeks 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 10 months 3 weeks 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 10 months 3 weeks 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 10 months 3 weeks ago #67866

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; 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 9 months 3 weeks ago #68025

  • PaulaKO
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Thank you!

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Telling Family and Friends 9 months 3 weeks ago #68026

  • PaulaKO
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Good point!

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Telling Family and Friends 9 months 6 days 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 8 months 3 weeks 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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