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Need to have an ITP Glossary

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12 years 6 days ago - 12 years 6 days ago #23931 by cgoewert
Need to have an ITP Glossary was created by cgoewert
I wan to know is there some way to add a Glossary to the forum. I keep finding myself having to having to open a new tab and then google a term, sometimes it is new and sometimes it is old. Then I have to figure out if it is relevant to me or just good information.

I would think there are a lot of people viewing the forum that it would help.

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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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12 years 6 days ago #23932 by Sandi
Replied by Sandi on topic Re: Need to have an ITP Glossary
Well, what sort of terms do you need help with?

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12 years 6 days ago #23933 by cgoewert
Replied by cgoewert on topic Re: Need to have an ITP Glossary
Some times it is the types of medications, sometime it is the blood chemistry, sometimes it is the treatments that I am not familiar with.

Some of the more recent terms I have to look up are:
Helicobacter Pylori
Naltresone

And I still do not remember which antibody is attaching itself to the plateltes.

Often the discussions, responses, questions are made by members that have an extensive knowledge of the issues and technical topics, such as yourself.

I learned a long time ago in report preparations that a glossary helps people with less familiarity of the topic gain better understanding of the issues.

I would think that some people that find the website or quickly frightened by the terminology. And giving them a glossary would lessen the fear and frustration that they have have just encountered with the disease.

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12 years 6 days ago - 12 years 6 days ago #23934 by Ann
Replied by Ann on topic Re: Need to have an ITP Glossary
What I found useful early on was to find a good website for drugs, one for bloods and the latest ITP guidelines and look at those when I came across something I didn't know.

Drugs for UK users
www.bnf.org/bnf/login.htm?uri=bnf/current/

Bloods
www.carbonbased.com/Definitions.htm
www.bloodbook.com/ranges.html#BLOOD
www.hoslink.com/labresults/refranges.htm

ITP guidelines
bloodjournal.hematologylibrary.org/content/115/2/168.full
The following user(s) said Thank You: Jacchab

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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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12 years 5 days ago - 12 years 5 days ago #23936 by Sandi
Replied by Sandi on topic Re: Need to have an ITP Glossary
Clem - I don't think anyone knows what antibodies they are. :cheer: I have to look them up too as it doesn't come up very often. Although the antibodies are the most important thing when it comes to ITP, no one places any importance on what type they are or how high the antibody titer is (for good reason). I had the test done early in my diagnosis and it made no difference in treatment decisions or predicting the course of the disorder.

I also look things up often - still. 14 years since my diagnosis and I'm still learning. New things come out all the time.

I will mention your request to the PDSA. In the meantime, just ask if you don't understand something. I have not thought of ITP terminology as frightening so I'm trying to look at it from that perspective to get a better understanding of where you are coming from.

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12 years 5 days ago #23940 by Ann
Replied by Ann on topic Re: Need to have an ITP Glossary
Thing here about antiplatelet antibodies. www.scripps.edu/mem/itp/antibody.html

As it says there they aren't routinely tested for. There has been some research going on in the UK so I've had mine tested and I know they found antibodies but I don't know which ones. They took 10 tubes of blood for it and they did it 3 times.

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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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12 years 5 days ago #23942 by Sandi
Replied by Sandi on topic Re: Need to have an ITP Glossary
That's a great start, Ann. I can throw together a sticky with that..anything else, anyone?

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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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12 years 2 days ago #24002 by Sandi
Replied by Sandi on topic Re: Need to have an ITP Glossary
Clem - I have discussed the glossary idea with the PDSA Executive Director. Neither of us is quite sure what you would like to see. Can you give us a better idea of what you are looking for, such as examples of the terms you would like defined? Part of the problem is that some of the things you mentioned are so broad that it would be difficult to include it all in a glossary. You mentioned treatments, but those are listed on the PDSA web site already.

Also, some of the words/terms mentioned here sometimes don't have anything to do with ITP, such as Naltresone. This is not an ITP treatment and has only been mentioned here two or three times. I had to look it up the first time I saw it also. I have never seen any hematologist prescribe it for ITP. We can't anticipate an off the wall medication or term that a person might mention and include it in a glossary.

We'd like to help you in any way we can, but need some help here.

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11 years 11 months ago #24242 by cgoewert
Replied by cgoewert on topic Re: Need to have an ITP Glossary
Hi Sandi:

A family friend (a nurse) stated that blood is the most complex part of the body to understand. What I am looking for with a glossary, is to have definitions for technical terminology provided.

Most people who have ITP, or who have to understand ITP do not have a medical background. Trying to understand and remember medical terms is an added burden. There fore having a ready reference should be a great benefit to most of the people.

I have been a geologist for 40 years. I learned a long time ago, that when I write for people outside of my profession, is that is have to simplify the writing as much as possible and provide a glossary for the terms that do no have a simpler substitute. When I write for other geologists it does not matter what terms I use or how many mulch-syllabic words, I use in a sentence.

When I read some of the messages, i do come across terms that I am not sure, and other times I have had to look the term up multiple times. I would imagine that many people have the same problems. I would not be surprised to find that many people do not read or continue to follow the forums, because of the frustration of understanding the terminology.

I do know that you and several others try to provide clarity on writing about ITP . And that helps. One professor I worked with, said about some reports or discussion items, it that when certain terms or complex ideas appear, it mean to "Turn the page" or hit the exit tab.

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11 years 11 months ago #24243 by eklein
Replied by eklein on topic Re: Need to have an ITP Glossary
I agree, blood seems to be really complicated to understand. I would like to get hold of something like an introductory textbook about blood, that would be a good overview for me. I haven't look for such a think, would be interested if someone knows of one.
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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  • 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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11 years 11 months ago #24246 by Sandi
Replied by Sandi on topic Re: Need to have an ITP Glossary
Okay everyone - please feel free to begin listing words/terms that you do not understand. I know blood is complex, but we don't have to know all about blood, just platelets. Clotting is difficult to grasp, but I've read that even student hematologists have a hard time learning it. Give me a starting point here, or some ideas. I'll find the definitions.

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11 years 11 months ago #24248 by Ann
Replied by Ann on topic Re: Need to have an ITP Glossary

eklein wrote: I agree, blood seems to be really complicated to understand. I would like to get hold of something like an introductory textbook about blood, that would be a good overview for me. I haven't look for such a think, would be interested if someone knows of one.
Erica

Any basic haematology book is good.

I got this one a few years ago and have found it brilliant.

www.amazon.co.uk/Essential-Haematology-Essentials-Victor-Hoffbrand/dp/1405136499

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11 years 11 months ago #24258 by eklein
Replied by eklein on topic Re: Need to have an ITP Glossary
Ann you got me trapped in a world of British spellings and money in pounds! Here is the link to the American dollar version: www.amazon.com/Essential-Haematology-Includes-Desktop-Essentials/dp/1405198907/ref=sr_1_7?ie=UTF8&qid=1335839357&sr=8-7
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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