OK guys, I know I haven't posted as much as I would have liked over Awareness Month. I have been doing some work to increases the general public's awareness. Plus of course I've had my really bad days where I couldn't even walk down the stairs the pain was so bad. It got me thinking that I'd love to hear some of your stories of how you've coped with your Endo, when you got diagnosed and what if any treatments you have found useful or have helped you along the way.
If you have something you'd like to share, either leave a comment or if you have a longer piece you can get in touch with me through the blog and we can work putting your stories up for all to read. Highlighting them if you will.
I find great support not only from my Family but also from all of my Endo Sisters and would love to hear from some of you.
One thing I will say is this; It's fine to express your opinion about your experiences but as we all know ignorance of this disease is many people's downfall. So if there are any negative comments on people's stories, they will be removed. I will moderate as much as I can so finger's crossed nothing horrible gets said to anyone (I've had experience with this through support groups, forums etc. People thinking that they're worse than you, you can't be in pain only to find out that they are not a sufferer at all, or that they are being hateful and aggressive.) If anyone encounters any of these issues on this page then let me know immediately please.
We have to put up with a lot of judgement because as I've said before if people could see what was on the inside, actually see the Endo there would be a lot more questions asked as it's visible to them. It's difficult dealing with an "invisible disease" without feeling you don't have a safe enough place to talk it out.
Let me know if this is something of interest. If not I shall have another post up soon.
Stay strong.
Wednesday, March 27, 2013
Thursday, March 14, 2013
Thank You!
I recently received word that through this blog and you're continued support we have raised to date $1989.64 since February 2013.
I want to thank each and everyone of you for your kind donations and am delighted that we have raised so much for such a good cause.
Just a reminder once again that it's our Awareness Month but a lot of you realise the truth is that we need to be creating awareness each and every month and not save it up just for March.
Once again thank you and I look forward to us raising more funds in our quest for an end to Endo.
I want to thank each and everyone of you for your kind donations and am delighted that we have raised so much for such a good cause.
Just a reminder once again that it's our Awareness Month but a lot of you realise the truth is that we need to be creating awareness each and every month and not save it up just for March.
Once again thank you and I look forward to us raising more funds in our quest for an end to Endo.
NEAM (National Endometriosis Awareness Month)
Ok guys, we're almost half way through March the month where we try our best to create awareness of Endometriosis. Some people are doing fun run's, other's wearing t-shirts or badges with statement like "Ask me about Endo" on them to encourage people to query; What is Endo?
Are you doing you're bit?
If you feel you don't have the time to run or you can't gain access to the clothing or badges why not make a donation? No matter how big or small there are a lot of charities, research centres and bioscience groups that need your generosity. My personal favourites are the ERC (Endometriosis Research Centre),
Endometriosis UK, or The Endometriosis Association of Ireland. Please find the links below.
www.endo.ie/
www.endometriosis-uk.org/
www.endocenter.org/
Any of these charities would be delighted to accept any donation large or small. If however, you would like to choose your own charity please feel free to do so this is merely a guide.
With reference to the "bioscience groups". I have had personal experience with Juneau Biosciences, they are looking for women to supply a sample of DNA to help with their studies in attempting to see if Endometriosis is genetic as many of us believe and also how to isolate the gene in order to aid the future generation's early detection and treatment so they do not have to suffer as long as many women have done.
Here's the link for these guys. It costs just time, a brief questionnaire, DNA in the form of a saliva sample, no blood and you need to give them access to your operative and or pregnancy records.
https://www.endtoendo.com/enroll/enroll.php
If you have any different ideas or even questions feel free to contact me here.
Are you doing you're bit?
If you feel you don't have the time to run or you can't gain access to the clothing or badges why not make a donation? No matter how big or small there are a lot of charities, research centres and bioscience groups that need your generosity. My personal favourites are the ERC (Endometriosis Research Centre),
Endometriosis UK, or The Endometriosis Association of Ireland. Please find the links below.
www.endo.ie/
www.endometriosis-uk.org/
www.endocenter.org/
Any of these charities would be delighted to accept any donation large or small. If however, you would like to choose your own charity please feel free to do so this is merely a guide.
With reference to the "bioscience groups". I have had personal experience with Juneau Biosciences, they are looking for women to supply a sample of DNA to help with their studies in attempting to see if Endometriosis is genetic as many of us believe and also how to isolate the gene in order to aid the future generation's early detection and treatment so they do not have to suffer as long as many women have done.
Here's the link for these guys. It costs just time, a brief questionnaire, DNA in the form of a saliva sample, no blood and you need to give them access to your operative and or pregnancy records.
https://www.endtoendo.com/enroll/enroll.php
If you have any different ideas or even questions feel free to contact me here.
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