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How did you find PDSA?

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14 years 11 months ago #1035 by barrelgal
How did you find PDSA? was created by barrelgal
I was just talking with my mom about going to the PDSA conference this year and she reminded me of how we found PDSA. After I saw the Dr for severe bruising and came back with a platelet count of 18k the Dr referred me to my hema and mentioned that it 'might be something called ITP' I of course called my mother on my way home and she used the great powers of Google and found PDSA. I remember it really well because she actually said 'I hope you don't have ITP, I don't want you to have anything where there is a whole association devoted to it!'

So after that too long story I wanted to say that now, a year and a half later I am SO GLAD that I have something with a whole association devoted to it! Not that I am glad I have ITP, but since I do, I really don't know what I would have done without PDSA.

Does anyone else have any good stories on how you found this platelet deprived corner of the internet?

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14 years 11 months ago #1038 by Bunnie
Replied by Bunnie on topic Re: How did you find PDSA?
I can remember it from the days when it ran on Joan's server and was www.ITPpeople.com and google hadn't even become an search engine.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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14 years 11 months ago #1041 by Kim
Replied by Kim on topic Re: How did you find PDSA?
I've been diagnosed since 1983, before internet and tried to find anything about ITP and couldn't, so had to rely completely on my doctor for information. He was good and I learned a lot from him, but I missed not knowing anyone else with ITP. When I found PDSA way back when it was itppeople.com,in I think 1997, I was so happy to have a connection to others who had ITP and continue to be happy to have a place to go and exchange information.

I'll be going to the conference, hope to see others (new and old) there.

Kim

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  • 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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14 years 11 months ago #1045 by Sandi
Replied by Sandi on topic Re: How did you find PDSA?
It was 1998 and I had just been diagnosed. I didn't have a home computer yet and I was researching ITP on my sisters computer. I came across ITPPeople and have been here since. Things have sure changed!

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  • 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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14 years 11 months ago #1058 by Angel85
Replied by Angel85 on topic Re: How did you find PDSA?
I found it just searching ITP through google and i thought it would be a good idea to check it out and register for the forum so i could talk to other people who have it.

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14 years 11 months ago #1064 by tofer
Replied by tofer on topic Re: How did you find PDSA?
I was searching lack of platelets in 1999 thats how i found it.
Love this place. :kiss:

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14 years 11 months ago #1076 by Christine
Replied by Christine on topic Re: How did you find PDSA?
Ditto for me. :)

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14 years 11 months ago #1085 by Siliconvalleygirl
Replied by Siliconvalleygirl on topic Re:How did you find PDSA?
I found it in the hospital, while they were diagnosing me. The ER doc that admitted me gave me a printout about ITP and said "I think this is what you have" and while I spent a week in the hospital with them confirming it wasn't something else and them trying IVIG on me, I had my work laptop and googled and found this site.

It was an enormous help from the very beginning - the first doc that saw me after diagnosis wanted to immediately schedule removing my spleen. I posted, and was quickly told in numerous messages NOT to do that as a first treatment LOL.

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14 years 11 months ago #1111 by itpdaughter
Replied by itpdaughter on topic Re:How did you find PDSA?
I just read over oneups shoulder repeatedly until I figured out where she was chatting :laugh: and then I began my google stalking of mother :woohoo: lol

I don't know how she found it... probably google? ... lol

* speaking of, if anyone cares she hasn't switched over- she just started college in Jan , shes too buussyyyy lol ... unless she picked a mysterious new username * lol

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  • 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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14 years 11 months ago #1120 by Sandi
Replied by Sandi on topic Re:How did you find PDSA?
Well, tell her we miss her here, and we're glad that she's doing so well with school - good for her!

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14 years 11 months ago #1135 by julia
Replied by julia on topic Re:How did you find PDSA?
I found it by Googling ITP 3yrs ago, after being released from hospital and given a basic leaflet about ITP along with being told we can fix this through a spleenectomy.
Thank god i looked on the PDSA page though, i almost didn't as PDSA in the UK is the Peoples Dispensary for Sick Animals! :unsure:
The site and the people on it has given me the control i need in life, the doc's over here care about money and cuts so you are not necessarly given the best options. I was badgered for my spleen and thanks to the PDSA i still have it & it aint going nowhere!
Julia

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  • 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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14 years 11 months ago #1144 by Sandi
Replied by Sandi on topic Re:How did you find PDSA?
Hey, there you are!

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14 years 11 months ago #1193 by julia
Replied by julia on topic Re:How did you find PDSA?
Sorry Sandi, im the UK Julia not Julia oneup :laugh:

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  • 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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14 years 11 months ago #1212 by Sandi
Replied by Sandi on topic Re:How did you find PDSA?
Oh, sorry. Well then, I'm happy to see you!

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14 years 11 months ago #1242 by
Replied by on topic Re:How did you find PDSA?
Always happy to see UK Julia - she is such a positive person and seems full of life.

My son found the PDSA for me after I came out of my "remission" in 2002.

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14 years 11 months ago #1247 by julia
Replied by julia on topic Re:How did you find PDSA?
Ahh thanks lol. Ive just brought cat no5 home today :ohmy: , he was brought to the shelter as a stray, dont know how old he is but he looks like hes had a ruddy hard life! I think hes been hit by a car in the past which has left him with a heck of a limp & bad back leg, shocking ears but he is full of love and affection. I fell in love with him & living in the cattery at the shelter was doing no good to his leg.
Hope Killian's doing ok
Julia

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14 years 11 months ago #1265 by
Replied by on topic Re:How did you find PDSA?
Julia what a lucky guy #5 is to have caught your heart! It sure does sound like he has had a hard life, now he will be able to relax and get lots of food and loving! How is he with the others and do they like him?

The Queen is doing well bless her heart, still skinny but I think that is going to be her from now on - she's a happy camper and that's all we ask!

Oh, does #5 have a name? :)

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14 years 11 months ago #1283 by julia
Replied by julia on topic Re:How did you find PDSA?
Hi Melinda, No5 is called Chico for now, Peter doesn't like the name & im not so sure but don't mind sticking with it. Peter is thinking hes more of a Rocky cos he is a big bruiser, i think hes more of a (Mickey) Michael cos hes a lover not a fighter :laugh: He got on fine with the other cats which im not surprised he must have lots of kids & great great great grand kids by now! He's frightened of the dogs but he will get used to them. He was sitting on my knee last night in front of the fire & i was massaging loads of knots out of his bad leg, hes took some cod liver oil and a joint tablet straight from the hand and ate them, he just purrs as soon as he sees you.
He's had a good checkup by the vet the shelter takes them to for his re occuring ear infections & abcesses but im thinking of an xray for his leg, his stomach is also huge, hard and round, the other vet thought it looked very odd but she couldn't feel any abnormality other than huge, hard & round.

Glad Killian's going well bless her! They can live just as well as the others with a bit extra tlc and be even happier!

Julia

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14 years 11 months ago #1297 by
Replied by on topic Re:How did you find PDSA?
I like Rocky, that's a good strong name for him - but if he's a lover how about Romeo ;)

Great to hear he and the others are getting along - Killian doesn't blame him for being frightened of the dogs, she isn't a fan of dogs at all [when our grandpuppy the year old Boxer is here she stays upstairs]. He is amazing if he took a pill right from your hand and ate!! I'm getting personal here - is he pooping? If you still have my email address you can email me, or go to my profile here and click on send message [can't remember wording]. Keep me posted on how he is doing!

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14 years 11 months ago #1365 by sannyt
Replied by sannyt on topic Re:How did you find PDSA?
We found pdsa 9 years ago when my son was diagnosed with itp. I met my best friend thru the site. And we are still friends to this day. My son doug has been dealing with itp since the age of 1. He is now 10. He was on the old sites picture album. Not sure if he is on this one. If it wasn't for this group we would not have known what to do. Many have helped us over the years.

My son was just diagnosed in Feb. 2009 as reaccurent itp.

Sandy~~ mom to Doug.

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