www.granulomatousmastitis.com

[JoJo45]

Hi all -

I started a site.  It is not fancy, I am hoping some friends will help me.

I feel it is all of our site - please provide ideas and feedback and what we should have on there to help people like ourselves.

The message I have just read from Lill reminds me clearly how serious this is, we need to get some information and healing for this horrible disease soon.

Jo

[JoJo45]

You are more than welcome...I am hoping to get some more energy to do more, maybe pull together a working group.  Still frustrates me to no end, that we do not yet have a proper level of awareness amongst the breast centres to facilitate early diagnosis and effective treatments.

Anyway, every one of you, as you share your stories, are creating the value of this site for fellow sufferers, and for the breast care community.

Cheers, Jo

[Red11483]

Thank you for creating this group and the website they are both so helpful and valuable to women facing GM or IGM.

[DalDavidson]

Hi all :)  I have recently been suspected to have granulomatous mastitis of the rt. breast. I am happy to share any info. of the experience so far if it would help any other women or medical professionals as to help us all learn more about this condition & effective solutions for treatment if there are any.  Also I would be happy to help support any other women who may be going through this also.  Thanks and God Bless. Donna Davidson

[WLD]

I took a look at the new site, im so glad it exists. I think it looks great and it is has a lot of information on GM. Good Job, so proud of the site. I remember when I was looking for some kind of support group after 9mths of being diagnosed with G.M.I was very disappointed that there were no support groups or any where I could easily find 1? I was extremely devastated when my second doc gave me options, treatment for G.M. And that’s how I came across this support group who was extremely supportive during my time of need.I’m glad this site is here to provide information & support to all. Thank you Jo for all that you do. Hope you are feeling better. Best wishes

[Amy669]

Jo:  I don't know the best way to do what you are asking, but here are some more keywords (not that you couldn't come up with these yourself)

mastitis - non-breast-feeding
shooting pain in breast
breast cysts
breast boils
draining cyst in breast
breast infections
recurrent breast abscesses.

[JoJo45]

Hi Cheryl -

How very kind of you - yes I would love it if you could help us add the right tags to have this site show up high in the ranking for anyone searching for granulomatous mastitis or idiopathic granulomatous mastitis...it would be very helpful.  I guess there might also be situations when someone is searching for symptoms, in which case this disease mimics Inflammatory Breast Cancer so symptoms would be: painful breast mass, redness, heat, inverted nipple, skin changes...any assistance on how best to do this, would be most appreciated!  I have very little knowledge on this.

By the way, I think this site is wonderful and it has really helped us, and I am so glad that it exists.  It has provided a lot of comfort to many of us.

[MH Community Mgr]

Hi,

If you have some other keywords (tagwords) you'd like me to add to the top of the post, it'll help with search engines finding this group!  Congrats on opening your new website and this user group!  If you have any questions, don't ever hesitate to let us know.

Also, we have wonderful trackers -- certainly we're glad to help you with them if you'd like to link them on your website, too!

Trackers:
http://www.medhelp.org/health_tools

Best,

Cheryl
MH Community Mgr

[JoJo45]

you know I checked out breast cancer site for inspiration - there is a 'pink ribbon' campaign, I don't know how local it is - here in North America - it has been incredibly successful

http://www.cbcf.org/

my Mom reminded me that there was a time when a woman diagnosed with breast cancer did not talk about it, because it was not ok

and everything starts small - I am hoping that one day, doctors will all know about this disease and better treatment options will be available...

in 2007 when I first had this diagnosed and tried to find some info or support there was none - so baby steps

[JoJo45]

Hi --

I agree with you, the main reason I put that site up, (and today I have to figure out how to move it up in the search rankings, for when someone googles GM, is that I want a place for a woman to find when she first gets diagnosed, and comes home and is upset and the only thing you find are medical articles which are terrifying and also hard to understand (unless you can find this medhelp string and group, but it is not always high on the rankings...

I have linked this support site to the www site, and agree we should keep posting here, for our support group.

I am going to try to get some physician assistance on the www site, I still have that surgeon that has indicated she would like to help and I need to message her on what we need.

I would like a reference page to some of the less clinical, and more informational medical articles on the disease, to be a part of the www site.

I deliberately made it plain English so people can maybe understand better than the medical literature...so it has its place, but agree it is different than here.

And we need to raise the profile of this disease...another reason for www.gm

Jo

[Amy669]

Jo:  the site looks great.  I am a creature of habit, and I would be more likely to add my new entries to this current site within medhelp than put something on a new site.  Is there any way you can transfer content from medhelp to you new site?  We have such rich collection of stories and discussion here.  

Amy