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National Organization for Rare Diseases

NORD does not have IGM in their index of rare diseases.  I'm not sure how, but we really need to work hard to get it included.
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Avatar universal
I am wondering if it is not time that we setup a working group, with some clear, achievable objectives, and get to work on raising this disease profile.

We have the passion.  We also have the skills.  The obvious obstacle, our illness, would affect our timelines and progress, but no one else is picking up this fight and I think perhaps a few of us could organize and communicate -- via Skype, the GM website (it has a lot of different features I just need to figure out and apply as might be appropriate) and get some stuff done.

I am in - sounds like Noelle is - and possible Leanek -- anyone else, we all know you are sick, and most of you have young children so absolutely no obligation - but even ideas would be welcome.  

I think we should set out some achievable objectives and get them done.  Probably just a few successes would make us all feel a lot better.

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Avatar universal
I'm definitely in! I was supposed to have the double mastectomy yesterday, but my dad died very suddenly so I had to postpone.  I'm hoping to have the surgery in 2 weeks or so, and will, hopefully, have more strength/better health after recovery.  As soon as I can, I would love to dig in to this.

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Avatar universal
Hi there -

So sorry about your father.  It never rains in life but it pours right...

REALLY hope you have as easy a go as possible with the surgery and recovery.  It is a really brave step for any woman, and seems to have helped a lot of our members.  I hate that there ever needs to be such an outcome though...

Let us know when you are feeling well and ready to go...

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Avatar universal
I have sent the following letter today.  I have been really not feeling well, so I have not done any work on IGM for awhile.  But two recent posts have reinvigorated me - so many of us are suffering, we need to raise awareness and medical expertise.  Anyway, October is Breast Health Month in Canada and I believe the States -- I am hoping to leverage on the campaigns currently in place to access some organizations that may be able to assist.

Does anyone else have any ideas for their countries or in general, for awareness campaigns?  I think making some positive action, for those of us well enough to do some work on this, as we are able, will have benefit - let's not give up or leave this to others.  Not enough progress is being made.

Maybe we can set up a working group - via Skype or email, with goals for awareness and networking and see what we can accomplish.  I know it can be therapeutic and I believe we can be productive and successful.  There is so much work to be done.  (I know our wellness and energy is limited, so we can work around this - no one else is doing anything so there is no alternative - we have to help ourselves). Thoughts?

TEXT SENT TO A LOCAL BREAST HEALTH ORGANIZATION 'Rethink Breast Cancer'  http://rethinkbreastcancer.com/

My name is.  I have Idiopathic Granulomatous Mastitis ('IGM').

Recently I started a support group: http://www.medhelp.org/forums/granulomatous-mastitis/show/707  and a web site www.granulomatousmastitis.com

If you take the time to read a few of the stories on the forum linked above, I think you will very clearly understand the toll this disease takes on young women.  I have also attached an article from Stanford outlining the disease.

What does this have to do with rethink?

Granulomatous Mastitis is a very serious breast disease which mimics breast cancer and most often affects young women, particularly of the child bearing age.  This disease is 'very rare', however it also so closely mimics Inflammatory Breast Cancer clinically, that misdiagnosis and mistreatment is often made.  I also believe that the rarity is really a lack of understanding and awareness, both on the part of physician and patient.

This disease can be devastating and very isolating.  It is terrifying to be diagnosed with something, and then to be told that no one knows what the origin is, or how to treat it, and then to have to make treatment decisions, based on anyone's best guess, while your breast is horribly painful and symptomatic. Resolution is often bilateral mastectomy.   Mine is the only support group I am aware of, therefore there is virtually no support for women receiving this diagnosis.  And obviously women in the developing world are just not supported in anyway.  Sounds like a modern day nightmare doesn't it - especially in this country with our massive breast health campaigns.

I am just not willing to accept, how many times I am hearing, from North America and Europe...'my doctors don't know what to do'...and the doctors are not providing treatment; but the breast is so painful 'I want it off' - these are young women, and I just can't believe we can't do better.  I hope it is not a numbers game.  I am too sick and tired to accept that at this point.  We have to help these women.

I am proposing we work together to raise the profile of this disease. It need not in anyway distract from your breast health message -- it is part of the same message.

Please support us, we desperately need a voice.


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1515564 tn?1431383300

Did you have the surgery? How are you doing? I am so sorry about your father...I am sure that it still hurts that you lost him. I wish I could help somehow. I wish I could help all of you somehow.

I am really interested in participating in any way I can in order to raise awareness about IGM. As I said in a previous post, I have not been diagnosed with IGM, but I am very certain that this is what I have...mainly through process of elimination, and because I have so many symptoms that correspond with what I am hearing from all of you - especially the strange ones that my doctors don't take seriously, like joint pain, flu-like symptoms, exhaustion, abscesses that eat through my skin, pain in the back of my neck and shoulder, and the list goes on.

Anyway, I am not sure what the best next steps would be, but I would be glad to help. I do feel sick a lot of the time (sometimes I am mildly better for a few weeks, and then I'm right back to feeling miserable; I can never predict what will come next). I also have 3 children. So, sometimes I am busy, but I don't really have much of a choice as far as making this sickness a priority in my life - it makes itself a priority whether I want it to or not. I can type, make phone calls, send letters, etc. I don't have Skype, though. I will do whatever I can to help.

I recently came across a webpage called www.ArmyofWomen.org I don't know if any of you are familiar with it. It is for breast cancer, and basically what they are doing is trying to get as many women as possible signed up so that they can gather information to help with breast cancer research. Then they send email invitations to members so that they can sign up for different research studies as they come up. Sometimes they want women with breast cancer, sometimes those with benign breast disease, sometimes they want women who don't have breast cancer so that they can use them as a control group. Currently almost 350,000 women have signed up. Even though this is for breast cancer, I agree that finding an organization that is already established is a really good idea (easier than going it alone). Maybe there is a way that we could somehow attach ourselves to this organization in order to raise awareness for IGM. Also, there are researchers attached to this organization; maybe one of them would be interested in helping us. What do you guys think?

What kind of goals do you have in mind, Jo?

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Avatar universal
Yes, thank you for asking. I had the bilateral mastectomy on 11/1. So far, the recovery is going well, with just a couple of glitches. Also, I suddenly developed a very sore throat/cold-like virus (?) 2 days after surgery, and 2 weeks later am now COVERED with a wierd rash--diagnosed as Pityriasis Rosaea. Supposedly "unrelated" to the IGM, but of course no one knows what causes it or why it shows up.

I have an absolutely AMAZING story to tell you all, which I'll post separately when I have the energy.

Until then, I want to encourage every one of you to keep posting---it makes a difference, and helps each of us to better navigate this bizarre, mostly unknown territory.
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