Thought it would be a good idea to point you in the direction of Joanne Zeis, she also has a blog called essential behcet's. You can find her newest post about flu shots at the link below and also on my blog under "Some sites for info on Behcet's" . I always find her reference articles very useful...Thank you Joanne!
http://behcets.blogspot.com/
You can also visit Joanne's website at www.behcetsdisease.com. Joanne states on her website that;
"Trying to find appropriate treatment is hard enough. Finding well-written, comprehensive information about Behcet's disease shouldn't be one of your frustrations."
She is spot on with this statement. Unfortunately I don't provide 'well-written, comprehensive information', however I will give you a good sob story anytime. Thanks to Joanne and everyone else that puts in the effort to help all of us sufferers. Did I mention she has written books on Behcet's? Make sure to check out the "Books" link on her website too.
From reading through the essential behcet's blog today I stumbled across a post;
From Cindy:
I have some good news for us all. Over the last two years I have been working with the VCRC (Vasculitis Consortium Research Center) to add Behcet's Disease to their database. Well I would like you to all know that this has now officially happened.
What this means to the Behcet's community....
- We can now register our names to be informed and included in any new research projects.
- Researchers don't want to take on rare diseases because it is too hard to find participants.
- With many BD patients on the data base, a researcher can then apply for more funding because he has a base of people to start off the study.
- Government funding is also more readily available
- Support groups can then help fund some of these studies.
It is SO very important that you register. It is just a short form which will take about 3 minutes to fill out. It does not hold you to participate in any study unless you wish to.
PLEASE take a few moments right now and join the registry. Let them know that Behcet's is not as rare as they think. With all of us registered, they will be able to see what a large group we have. Also send this to any others who have Behcet's Disease. It is not country-specific.
JOIN HERE: http://rarediseasesnetwork.epi.usf.edu/vcrc/registry/index.htm
So I registered...now it's your turn!
Showing posts with label Behcet's Disease. Show all posts
Showing posts with label Behcet's Disease. Show all posts
Thursday, November 18, 2010
Monday, April 12, 2010
Day 7. Why am I blogging?
Hi! If you're new to this cool blog you may want to start at the beginning "Day 1. Drugs and Boobas".
Day 7. Why am I blogging?
At first I wasn't really sure why I started my blog. I thought I would do it because someone told me I should. I figured they saw some potential in me and since I love to write, it made sense to do it. But as I started doing more research about my Behcet's Disease I realized that having a rare disease is the loneliest feeling I've ever encountered (and I was an only child so I know a little about being lonely). To top it off I have a rare symptom of a rare disease which has made it even more difficult. (I'll blog about my rare symptom after I know more about it)
I just want to talk to another person with Behcet's that has shrinking lungs..is that too much to ask for?
Jess commented on my post yesterday and she is absolutely right. Someday this blog is going to help someone else and hopefully it will eliminate the sad and lonely feeling that accompanies this horrible disease. To that person I say...Dear Person, You aren't alone, please keep reading I have a lot to say, I hope this helps you, I hope that I write everything you want and need to hear. PS. Start blogging now so that you can help someone too!
The other reason I'm blogging is because (as my husband has pointed out) it's "therapeutic" and apparently I'm "a good writer"....I love you David.
There is also that small bit of wanting to educate the world about this disease.
Check out this website for more information on Behcet's Disease...watch the video, it's very interesting...and if you're looking for a charity, this is a great one!
www.behcets.com
Day 7. Why am I blogging?
At first I wasn't really sure why I started my blog. I thought I would do it because someone told me I should. I figured they saw some potential in me and since I love to write, it made sense to do it. But as I started doing more research about my Behcet's Disease I realized that having a rare disease is the loneliest feeling I've ever encountered (and I was an only child so I know a little about being lonely). To top it off I have a rare symptom of a rare disease which has made it even more difficult. (I'll blog about my rare symptom after I know more about it)
I just want to talk to another person with Behcet's that has shrinking lungs..is that too much to ask for?
Jess commented on my post yesterday and she is absolutely right. Someday this blog is going to help someone else and hopefully it will eliminate the sad and lonely feeling that accompanies this horrible disease. To that person I say...Dear Person, You aren't alone, please keep reading I have a lot to say, I hope this helps you, I hope that I write everything you want and need to hear. PS. Start blogging now so that you can help someone too!
The other reason I'm blogging is because (as my husband has pointed out) it's "therapeutic" and apparently I'm "a good writer"....I love you David.
There is also that small bit of wanting to educate the world about this disease.
Check out this website for more information on Behcet's Disease...watch the video, it's very interesting...and if you're looking for a charity, this is a great one!
www.behcets.com
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