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PDSA on Facebook (A refreshing distraction)

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14 years 10 months ago #16580 by GeekMonkey
PDSA on Facebook (A refreshing distraction) was created by GeekMonkey
Hi All,

Recently, I went into relapse with TTP on May 23rd. I was in remission for about 22 months. While I am currently hospitalized, I have come across a very SUPPPORTIVE TTP/ITP group on facebook:

www.facebook.com/groups/10663516172?ap=1

The Facebook members in this group are very caring, supportive and understanding for us who survive and live with this disease. We know not everyone understands the ramifications of what this disease does, BUT, everyone in this group DOES, which is why I am grateful for their camaraderie and support.

Please check this group out, and join.

High Plates All!!!

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  • Melinda
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14 years 10 months ago #16583 by Melinda
Replied by Melinda on topic Re: PDSA on Facebook (A refreshing distraction)
That's very nice GeekM but one has to have a facebook account to go there and I do not do facebook.

Granted we don't really know much/anything about TTP here but we sure do know about ITP. Personally I think we are a very supportive, caring group. Those here who don't have ITP have a loved one with it and understand the ramifications of the disease [oh I don't like that word - I really do not feel I am diseased] from the standpoint of a loved one.

I'm really grateful for the support and friendship from this pdsa group - have some good friends here. I've had ITP for 22 years.

Wish I could check out the group you mentioned, but can't. Sorry your TTP has relapsed, hope you can get into another remission that lasts for a very very long time!!

Take care!

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  • Angel85
  • Offline
  • 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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14 years 10 months ago - 14 years 10 months ago #16598 by Angel85
Replied by Angel85 on topic Re: PDSA on Facebook (A refreshing distraction)
I am on that group on facebook and while it is a very supportive caring group, i also find the members on this forum to be very caring and supportive as well and it is so much easier to look and read posts and respond on this forum. On the facebook group, u have to make a wall post and other people comment after u and it is not a very productive way to read and respond, especially if they are very long posts.

P.S. I noticed a mistake and came to edit my post. If u notice a mistake after u have posted on the facebook group, u have to either just leave it or delete and re-post the whole thing again. Not being negative about it, but it is much easier here.

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14 years 10 months ago #16644 by Dean
Replied by Dean on topic Re: PDSA on Facebook (A refreshing distraction)
Just recently joined. I agree with Lauren, it is much easier to post here.

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Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or pdsa@pdsa.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

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IMPORTANT!

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.