To help women and girls who are just learning about polycystic ovarian syndrome (PCOS or PCOD), perhaps from a recent diagnosis, I have created a PCOS glossary page on the PCOS Today site. It includes many of the common (and some not-so-common) terms used surrounding PCOS. If any additions are needed, please let me know through a comment to this site, to PCOS Today, or via e-mail. Thanks!

Of all the things to provide me inspiration, I was reading “The Venetian Betrayal” by Steve Berry recently. His books of international intrigue, which usually surround the Eastern European block, Rome and The Vatican, have kept me enthralled for the better part of the past year.

In “The Venetian Betrayal,” there is a fictional plot that the leader of a new Eastern European-block federation (through a less-than-legal partnership) has found a cure for HIV and AIDS. A discussion on page 319 of the hardback edition of the book reviews the fights between pharmaceutical companies and the world’s perspective on AIDS. It follows:

“It didn’t matter to you that people were dying by the millions?

And you think the world cares about AIDS? Get real, Grant. Lots of talk, little action. It’s a unique disease. The perception is that it mainly kills blacks, gays, and drug users. The whole epidemic has rolled back a big rotting log and reveald all the squirming life underneath — the main themes of our existence — sex, death, power, money, love, hate, pain. In nearly every way that AIDS has been conceptualized, imagined, researched, and financed, it’s become the most political of diseases. 

And what Karyn Walde said earlier came to mind. It’s just not killing the right people (emphasis in book).”

This interaction in the book really made me stop and think. It made me search around in my bedroom, where I do most of my fiction reading, for something to mark this page so I could continue on with the plot but not forget about the passage. What did this all make me stop and think about? Polycystic ovarian syndrome, its awareness, it’s image as a disease, and its impacts (many though they are). Let me break down my thoughts and connect PCOS to this book’s passage.

Does the world care about PCOS? — I think this is an incredibly relevant question, especially after considering what my philanthropy and public relations students have said about fundraising for chronic and terminal illnesses like breast cancer, heart disease, etc. versus PCOS. Those of us who are afflicted by PCOS, who deal with its symptoms every day, do care about the syndrome. While there is a large-ish chunk of the female population that faces PCOS daily, what makes the rest of the world care about it? It’s a niched issue. I’ve often wondered if it’s too niched. Is there lots of talk but little action? I don’t think so. The plethora of grassroots and larger organized groups, blogs (like this one), information portals (like SoulCysters, etc.), and so-on and so-forth tells me there’s a lot of talk and a LOT of action. But let’s be truthful about that action. It’s all on the patient side. Are we not doing it right? Are we not doing enough to propel the syndrome, in the medical and related professions eyes, to launch us from something that may have a standard diagnostic criteria to the forefront? In more than one interview I’ve done for PCOS Today, I’ve had medical professionals tell me that while there may be a standard diagnostic criteria for PCOS, it’s not used effectively (meaning not everyone either a) knows about it or b) actually uses it if they do know about it). With that information, can we even say there’s a true medical standard for the syndrome, or is it just some anomolous medical cloud out there that is merely being swatted at but not completely grasped?

Has PCOS ‘rolled back a big rotting log and revealed all the squirming life underneath?” — Why did the original statement (see above) speak to me? I think it’s because I feel that the issues related to PCOS, and especially the infertility rampant due to the syndrome, are treated as tertiary, as a choice almost…perhaps even considered not important to everyday life. But at the same time, I’m a little amazed at my own thoughts. All the research to-date about PCOS has taught us about the secondary issues that can (and usually do) plague those with PCOS - the heightened potential for heart disease, stroke, endometrial cancer - never mind the fact that women struggle to conceive just to start a family. While some of us (me included) have made an active choice not to have children (for various and asundary personal reasons), what about those who badly want children but can’t have them? Are these secondary (yet incredibly debilitating) health issues and the infertility crisis just not considered that important? If so, then I’d say we’ve become an incredibly cynical society. We’ve become so jaded that the impact of a syndrome (a collection of diseases, as it’s been called) means nothing. Are we just not putting the face on PCOS that we should? Does the world need to see the ugliness of the syndrome to really understand its affects? At this point, it’s not “the most political of diseases.”

I wish I had the magical answers to these questions. What is it going to take for PCOS to get the recognition it needs to be top-of-mind? I’m sure this question is going to plague me for the rest of my days.  

Dawn Davenport, creator of the Blog radio broadcast, Creating a Family, will interview me this Wednesday, Jan. 9, at 12 p.m. EST. Creating a Family is an ongoing discussion about infertility and adoption. Dawn's talk show encourages listeners to call in and ask questions about infertility, adoption, and assisted reproduction. Dawn wrote "The Complete Book on International Adoption" (Random House, 2006). I'll be discussing PCOS diagnosis, finding a doctor, working with the medical community, infertility, and other ways PCOS can affect your life. I encourage anyone and everyone to call in (the information is below), ask questions, submit comments, and listen as we discuss PCOS. The broadcast will last for approximately one (1) hour.

Creating a Family Call-in Number: (347) 215-8510

Angela Grassi, a licensed dietician headquartered in Haverford, Pennsylvania, has been a regular columnist published in PCOS Today Magazine. She has focused her entire practice on the service of women and girls with PCOS. Earlier this fall, she completed and published her new book, “The Dietician’s Guide to Polycystic Ovary Syndrome.” I have written a review about her book, which will be published in an upcoming issue of PCOS Today Magazine, but I am going to preview it here as well. Her book, as I describe in my review, is well worth the purchase price…for both professionals working with PCOS clients, as well as women with PCOS. Here’s the review. Please feel free to comment on it, and visit Angela’s site to learn more about her practice.

My copy of Angela Grassi’s recent book, “The Dietician’s Guide to Polycystic Ovary Syndrome,” has a glass-bottom stain on it and part of the cover is ripped. Ms. Grassi’s jam-packed tome of up-to-date information about PCOS has been used and reused by this author since its release just a few months ago.

During the past decade or two, a number of books about PCOS have been released. Some are rather general, others carry a heavy load of relevant content. The difference with Ms. Grassi’s book is that while it was originally written with practicing dieticians and nutritionists in mind, women with PCOS will find it a thorough resource. Its more than 200 pages, including appendices, cover topics including both the physical and psychological aspects of PCOS, dietary strategies, alternative and complementary treatments, PCOS in adolescence, pregnancy, eating disorders, and sample menu plans. For dieticians, Ms. Grassi provides common IDC-9 codes and case studies, as well as organizations and publications that can provide both professionals and PCOS patients with more information about the disorder.

Throughout the book, Ms. Grassi asks a number of compelling questions and makes a number of compelling statements about working with women with PCOS. Does the American diet cause PCOS? The role of the dietician in treating PCOS. Weight loss to improve PCOS: Is it necessary? Polycystic ovary syndrome and pregnancy. In full detail, Ms. Grassi covers the Glycemic Index, postpartum weight management with PCOS, antiandrogen therapy in adolescence, thorough descriptions of herbs and supplements that can be used to decrease the severity of PCOS symptoms, and questions dieticians can use to screen patients for PCOS. Especially helpful to this author, who likes to have quantifiable information to gauge her food intake by, is a table of suggested carbohydrates amounts for women with PCOS, dependent on calorie intake. As a reformed label reader, I can now decipher how each serving’s grams of carbohydrates fit into the grand scheme of my diet.

Rounding out Ms. Grassi’s book are sample menu plans and a candid discussion of quality of life issues affecting women with PCOS, and how they can lead to the development of eating disorders. Following each chapter is a complete list of references for both professionals and women with PCOS to find more information.

Designed to accompany this guide is the PCOS Nutrition Handout Series on CD. Included on the CD (sold separately) are 20 printer-ready assessment, food exchange, mindful eating exercises, resources for PCOS clients, shopping for whole grains, and nutritional supplement handouts, among many more, for use by dieticians and nutritionists working with PCOS clients.

Published by Luca Publishing of Haverford, Penn., “The Dietician’s Guide to Polycystic Ovary Syndrome” is a book that not only every practicing dietician and nutritionist should have on their shelves, but any professional who comes into clinical contact with women suffering from PCOS. But not only will professionals working with PCOS clients find this book helpful, but women with PCOS will be well-armed to work with their doctors, dieticians, reproductive endocrinologists, and gynecologists to fight the symptoms of PCOS and its related issues. “Although it’s a little technical,” Ms. Grassi said, “I think it is a great resource for all women with PCOS.”

More information about the book and CD handout series can be obtained by visiting Ms. Grassi’s site at www.PCOSnutrition.com, or by e-mailing her at agrassi@pcosnutrition.com.

I’ve been fighting with the questions I pose in the title for this post for quite a long time. E-zines, or online magazines, are relevant in regard to costs and ease/speed of communication. They are digital publications in the truest sense.

I work in journalism and mass communications, public relations and whatnot. I teach students about creating tools to publicize, publicly communicate, and strategically reach target audiences. One of the discussions often brought up among students and colleagues alike surrounds the concept of a paperless society, the death of newspapers and other publications, and what seems to be a general disregard of the potential relevancy of digital publishing.

I’ve fought with this as I continue to morph and evolve PCOS Today Magazine. It’s been in PDF form in the past. It’s been strictly online, but I haven’t been able to create a thoroughly interactive quality to it, and it’s been in hard copy (which I’ve been griped at about cost vs. amount of content). I wonder sometimes that with the sheer breadth of information available, that we in society expect the information to be freely available. Information is king, as long as it doesn’t cost a thing.

So what is needed for PCOS Today Magazine? I’m still quite comfortable with the idea of it being strictly an online publication, an e-zine. I’m finding that advertisers are more excited about reaching readers online than in the “standard” hard-copy format…which as an old desktop publisher like me is still a little surprised (but secretly giddy) about. I also think I’ve *finally* found a content management system (squarespace.com) that a student turned me on to, that will work. It will help provide the page-by-page, interactive content that readers want with the ease of content management that I need (because my Web skills are still a work in progress). Every time I finish a new design or content upload for PTM, I like to think I can sit back and relax, rest on my laurels. If I’ve learned anything through this experience, it’s that it’s always, run, run, run, and content, content, content. It’s obviously time to bring it all together.

Thank you for indulging me this publishing rant. Now back to our regularly scheduled PCOS discussions…