Platelet Disorder Support Association

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new here today

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15 years 6 months ago #2701 by vgrannis
new here today was created by vgrannis
i have had itp for 22 years now any one else
15 years 6 months ago #2733 by
Replied by on topic Re:new here today
There are some of us who have had it a long time - I go back to 1989.

Do you know if there is a support group in your area? Here's a map that shows the
support groups - you can click on a circle and information will come up about the group.
www.pdsa.org/join-the-community/local-groups.html

Hope your count is doing well!
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15 years 6 months ago #2736 by Christine
Replied by Christine on topic Re:new here today
Since 1979 for me. When asked by docs if anything is not normal I say "What is normal?" :) :) :)
15 years 6 months ago #2767 by
Replied by on topic Re:new here today
I'd have to say "normal what?" ;)
  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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15 years 6 months ago #2780 by libelder
Replied by libelder on topic Re:new here today
Diagnosed in '87, counts ranged 0-9 for probably 18 years but didn't start treating until about a year or so ago when they released NPlate. I never saw how turning off my immune system would make me healthier.

Would you share your story with us? How'd you wind up here?
  • 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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15 years 6 months ago #2789 by Sandi
Replied by Sandi on topic Re:new here today
Lib - are you still using NPlate? You've been gone for a while!
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15 years 6 months ago #2793 by rhonda
Replied by rhonda on topic Re: new here today
Welcome, nice to meet you.
  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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15 years 6 months ago #2801 by libelder
Replied by libelder on topic Re:new here today
Sandi I am still on NPlate. I got probably 4 months of straight good counts using 150mcg. every ten days, then got the flu in December and ever since I'm bouncing around between 4-150 with no rhyme nor reason. We've upped me to 180mcg., although prior to getting flu that dose took me up to 800+. Who knows though, with me? It's hell bein' special I tell ya! :laugh:
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15 years 6 months ago #2811 by julia
Replied by julia on topic Re:new here today
Hi Lib, how ya doing? Have you done your trip yet?
Julia
  • libelder
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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15 years 6 months ago #2826 by libelder
Replied by libelder on topic Re:new here today
Hey Julia, huge changes in plans stopped the trip but my life has never been better.

No word yet from our original poster? We really would like to hear your story, now that you've make yourself known you'll find a lot of support here if you need it.
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15 years 6 months ago #2828 by Lorie85
Replied by Lorie85 on topic Re:new here today
Lib, hope your counts stay up on N-Plate! I have really low platelets ( 2K-3K). Would you be able to share how you were able to go without treatment for that 18 year period? How did you manage bleeding? Didn't your Hemo have panic attacks when they saw your counts? lol
  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 6 months ago #2849 by Angel85
Replied by Angel85 on topic Re:new here today
Welcome, i have had ITP for about 20 years now. I was diagnosed with it when i was about 5 years old and i am 25 this year.
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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.


Platelet Disorder Support Association
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