Wednesday, March 04, 2009

Looking for women with autoimmune disorders, PCOS, lupus, IBS, fibromyalgia, chronic fatigue for a story

I'm doing a story for HEALTH magazine on diseases that a) disproportionately affect women and b) have historically been unrecognized, under-treated, or generally pooh-poohed by the medical establishment, but are now being recognized and/or taken more seriously. I'd like to tell several personal stories as part of the bigger piece.

So if you have had or still have any of the conditions above, or anything similar, and would be willing to let me interview you and possibly tell your story for the piece, please email me at hnbrown at syr dot edu.

Many thanks.

13 comments:

Rachel said...

Do you know about HARO (Help a Reporter Out)?

Harriet said...

I do now. Thanks! I posted a request and got a couple of responses already. The power of the internet. . . .

Sarah said...

Yes, me. PCOS officially diagnosed age 14 (I'm 22 now). I pretty much have had every symptom, and have found natural ways in decreasing them, but still deal with some. PCOS hit me right during puberty, and is a huge factor in my Ed consdiering I need to be on a certain type of diet to control the symptoms. I'd be very interested in being a part of your article.

Anonymous said...

There is also Hashimoto's Thyroiditis and Pernicious Anaemia. They are both auto-immune and at least the first one is mostly women. I don't know about PA.

Keechypeachy

Isabel said...

I sent my mum (who has fibromyalgia, CFS, and a lot of bad experiences with the medical establishment & some nonmedical people too) a link to this page & your email; she'll probably contact you soon.

Rachel said...

FYI... Lots of national health magazine writers use HARO for stories they're writing on dieting and weight-loss, so it's great to be able to contact these people before they go to press and hopefully sway the thrust of their stories in more positive directions.

Joanna said...

Yes, I have PCOS -- officially diagnosed at 25 after years of health care professionals telling me to just lose some weight. Had to fight like heck to get diagnosed and treated, too (this was almost 10 years ago).

Dina said...

I just sent an email to you...

Anonymous said...

Perhaps it's not in the same class, but I'm always trying to get the word out about Vulvodynia. It's a terrible condition that needs as much press as it can get!

Lessie said...

Have you looked into APS (Antiphospoholipid Syndrome). If there is any disease that is misdiagnosed and misunderstood, it is that one. Chronic, for life, perspective shattering and utterly unknown to people - you could probably write lots and lots just on that disease alone. Visit www.apsfa.org and trot on over to the forums there... lots of stories and experiences which we are not ashamed to share for knowledge is the key to better living.

Aloha nui.
LZ

Leigh Ann said...

Great article topic. I've often wondered which came first for me...like is/was PCOS the chicken or the egg?

Anonymous said...

I agree with Lessie when it comes to Antiphospholipid Antibody Syndrome. I'm 24 and have been living with APS (knowingly) for 4 years and even though I have it, I dont know a whole lot about it because doctors dont even know that much. I think it would be wonderful if you could find out some info about it and make it a little more known to the public. You could definitely save lives with it. Thanks

Harriet said...

Hi Anon,
I know a little about that--a friend of mine has it. Unfortunately the story I was doing has morphed quite a bit, and APS won't be part of it. :) Another time, maybe.