Platelet Disorder Support Association

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Telling Family and Friends

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6 years 13 hours ago #67853 by PaulaKO
Telling Family and Friends was created by PaulaKO
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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6 years 1 hour ago #67855 by CindyL
Replied by CindyL on topic Telling Family and Friends
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.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 11 months ago #67863 by Hal9000
Replied by Hal9000 on topic Telling Family and Friends
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.
ITP Types and Treatments by HAL
  • 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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5 years 11 months ago #67866 by mrsb04
Replied by mrsb04 on topic Telling Family and Friends
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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5 years 11 months ago #68025 by PaulaKO
Replied by PaulaKO on topic Telling Family and Friends
Thank you!
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5 years 11 months ago #68026 by PaulaKO
Replied by PaulaKO on topic Telling Family and Friends
Good point!
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5 years 10 months ago #68165 by NK18
Replied by NK18 on topic Telling Family and Friends
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.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago #68221 by Hal9000
Replied by Hal9000 on topic Telling Family and Friends
NK, was it a 50mg dose that brought your counts up to 80 before surgery?
ITP Types and Treatments by HAL
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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