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Scripps Institute website can help

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14 years 7 months ago #12921 by cirquefan
Scripps Institute website can help was created by cirquefan
I was diagnosed with ITP in 2005 and have been through the whole range of treatments such as IVIg, Prednisone, Splenectomy(removed 2 spleens), Rituxin, Decadron,Vincristine. Nothing ever had any long lasting effects except the Prednisone which gave me cataracts and a few other problems. All through the remissions and relapses, I relied on the Scripps Institute's website www.scripps.edu/mem/itp/describe.html . Scripps has been doing research on ITP for a long time and is considered an expert on the subject. I did not know about PDSA until a few months ago and think it is wonderful. If you look at the information on both websites, they can help answer questions you may have.
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14 years 7 months ago #12933 by eklein
Replied by eklein on topic Scripps Institute website can help
Thank you, I'm always up for more good info. The link in your post came up not found. Is this more or less what you were pointing to: www.scripps.edu/mem/itp/

?
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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14 years 7 months ago #12938 by cirquefan
Replied by cirquefan on topic Re: Scripps Institute website can help
Hello Erica,
Thanks for the correction on the link. The one you posted is correct. I did a quick copy and paste and messed up. I'm not too good with all this modern technology.
I'm glad you are of the same opinion I am. The more info the better. When we first started the ITP circus, my husband and I were totally lost. The Scripps site helped us tremendously. I just wish we had found PDSA at that time as well.
14 years 7 months ago #12954 by
Replied by on topic Re: Scripps Institute website can help
Interesting......some good basic information.
However, the first thing I saw on the website was: Updated: 5 April 2007.
That seems to indicate the information hasn't been updated in nearly 4 years?
They still have Promacta (Eltrombopag) and Nplate (AMG531) listed in the 'Experimental Therapy' section.
.
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14 years 7 months ago #12957 by cirquefan
Replied by cirquefan on topic Re: Scripps Institute website can help
Yes, some of the info is out of date now but I relied mostly on the basic info such as treatments,causes etc that I needed to know when we first were confronted with ITP. Like I said before, Scripps and PDSA are great references but PDSA is more up to date.
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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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