Month: July 2009

Our goal here at WEGO Health is to be the home of Health Activists: a place for those passionate members of the online health community, who love to help others with information, resources and support.

Many of our members tell us they are looking to connect with other Health Activists who are passionate about a particular health condition, issue, disease or topic.
For these Health Activists, we’ve created 40 Groups, including:
If you haven’t joined a Group on WEGO Health yet – check one out, sign in, and click the “Join Group” button today!

This week on WEGO Health Loves: Frozen Pea Fund

Ever wonder if Twitter can really be used to start a movement? Well it can.

Just ask Susan Reynolds. Self dubbed the “Nana” of Twitter, Susan is a breast cancer survivor and catalyst for the Frozen Pea Fund.

Frozen Pea Fund isn’t just another fundraising campaign, it’s a story of support and the creation of a community around a movement for awareness and a search for a cure.

What started as a way to support Susan during her own cancer journey soon transformed into something far greater. It has brought together individuals bounded by a common experience to raise awareness and thousands of dollars for cancer research.

Susan’s personality is contagious. Her sense of humor in the face of adversity and her willingness to openly tackle such a devastating disease is inspiring. Frozen Pea Fund and Pea groupies alike reveal the power and potential of community, the web and the Twitter-sphere.

Susan on the web:

Read more about Susan and the Frozen Pea Fund “How Frozen Peas Started A Movement” in the Washington Post

Wondering what other sites we love?

In the last few weeks a handful of really interesting Alzheimer’s studies have emerged. These studies prove that, though there is still a long way to go in the treatment and prevention of this devastating disease, there are a lot of great things happening in the research community. Every advancement points in the right direction. Many new study results were shared recently at the Alzheimer’s Association conference in Vienna, Austria. And in addition to being informative—all of us at WEGO Health found these studies really fascinating. Here are the highlights:

First up— New tests might detect Alzheimer’s early on. By studying brain changes and body chemistry over time, researchers are getting closer to detecting Alzheimer’s in its earliest stages. This information will eventually lead to new treatments including new medications.

One study, in Ireland, found that combining results of MRIs that measure brain volume with a series of memory tests could accurately identify nearly 95% of people who had progressed from “mild cognitive impairment” to early Alzheimer’s. Another study in the US found that combining results of certain brain scans that measure glucose with a person’s low scores on memory tests were also a strong indication of disease progression. People who did poorly in both glucose measurements and memory tests were considered 15 times more likely to progress from Alzheimer’s within 2 years. Another similar study looks to changes in spinal fluid in combination with brain structure as a possible signal of disease progression.

Right now, unfortunately, an autopsy is the only way to be certain that someone has Alzheimer’s. The plaques and brain tangles are only truly detectable via post-mortem analysis. The tests researchers are doing on living patients are very subjective since they are often based on memory tests. This means that the studies by drug companies must be a) conducted on lots patients b) spend a lot of money on these tests.

Some of the most intensive studies are being done to detect an “Alzheimer’s gene.” People who have relatives with dementia might be at a significantly higher risk of contracting the disease. There are two major genes found in the brain—APOE4 and TOMM40 that, combined, account for about 85-90% of the genetic effect of the disease. Tests can be done to detect if you have these genes. Read more here.

But did you know that the medical community used to discourage people from being tested early for the Alzheimer’s Gene? It’s true. Researchers thought that people who tested positively for the APOE4 gene might be devastated by their increased dementia risk, that they would live in panic. However, a new study proves this to be false. Genetic tests on relatives of Alzheimer’s patients do not cause them mental duress and devastation. Those who were made aware of their heightened risk were no more likely to be distressed or live in fear. In fact, some study participants who were told that they do have the Alzheimer’s gene were actually relieved to know their risk and glad to be able to consider planning for the worst-case scenario. Read more about people who took the genetic test here.

Have you heard that people who are articulate in their 20s are less likely to develop Alzheimer’s? Researchers being articulate early in life could prevent Alzheimer’s—even if the person shows brain indicators of dementia. Researchers knew that some people who have “severe plaques and tangles” in their brain and show no symptoms of memory loss while others with similar brain tangles may have a severe case of Alzheimer’s. This fact caused researchers to consider how language/articulation might affect the onset of symptoms.

In the study – researchers examined old essays written by their participants (38 deceased nuns) as they entered the convent in their early 20s. They looked for how many ideas were expressed every 10 words and how complex the grammar was. Women without memory problems scored 20% higher on these language analyses of their old writing. The grammar tests showed no difference. So now researchers are looking into the idea that articulate young people lead to adults without dementia. Yet another reason to try hard in school and keep our brains sharp throughout life! Learn more here.

Another startling study claims that spouses of people with dementia are a substantially higher risk of developing dementia themselves. After following 1,200 couples for 10 years, researchers found that wives who care for husbands with dementia were 4 times more likely to develop dementia than wives of husbands without the disease. And for husband care-givers? Husbands who take care of wives with dementia were 12 times more likely to develop the disease than those whose wives were cognitively healthy.

Why is this? Dementia is not contagious. Researchers think that the stress involved with caretaking is a huge factor. Stress is high among caregivers—especially for those who care for someone with degenerative diseases like Alzheimer’s. In addition, stress is also a known risk factor for getting dementia. Plus, those who are stressed-out are less likely to eat healthy and exercise—both of which help the brain stay healthy.

You might think that environment is a possible reason as to why both husbands and wives come down with dementia. However, this study isolated these factors and concluded environment, education, and genetics were not factors.

But why? Doctors believe that it might be because older men often rely on their wives to keep up social ties with relatives and friends. Once she has dementia, she loses this ability – and he too suffers the consequences of a missing social life. Also – wives play a big role in getting men to see doctors. Men who don’t have the extra nudging from their wives about staying healthy can succumb to high cholesterol, high blood pressure, and other conditions that may increase the risk of dementia. It’s important that caregivers receive help so that they can manage stress and find relaxation in order to maintain their own health in the midst of an Alzheimer’s spouse. Read more.

Have you heard that eating fish helps boost memory? This is likely. Omega-3 fatty acid supplements may boost memory in healthy aging adults. A test was done on people with “mild memory complaints” where some were administered placebos and others were given an Omega-3 supplement (of docosahexanoic acid – DHA). There was a slight improvement among those who took the supplement. Although these results were positive, the Alzheimer’s Association does not yet recommend that people take supplements to fend off age-related memory loss. This might be because another study said that there is no difference between those who have taken the Omega-3 DHA supplement and those who haven’t. Even with those who were tested positively for the APOE4 gene variant, DHA had no effect. Weirdly, those without the gene that used the supplement did see a bit of improvement. This proves that this type of treatment might only be effective if administered extremely early on. More about Omega-3 studies here.

All of these results prove that Alzheimer’s is a complicated disease. Sometimes the brain indicates illness and other times the same results do not necessarily mean someone will get dementia. Only time and more research will tell if how we live now can affect our chances at getting this awful disease. Until then, the usual healthy living ideas we hear so much (diet, exercise, social interaction) are all we can really do.

Join the Alzheimer’s Group

Love coffee? Check out Sarah’s blogpost: Could 5 Cups of Coffee Prevent Alzheimer’s?

Read about GPS Shoes – new technology for tracking Alzheimer’s Patients

Browse all the WEGO Health blogposts about Alzheimer’s


As you may know, WEGO Health recently began a series of webinars on Twitter (Twitter Fundamentals for Health Activists and Twitter Power Tools for Health Activists). We’ve heard from all of you that you’d also be interested in webinars about specific health topics.

We’re currently working to put together a webinar about migraines, with a physician presenting information and hopefully some time for Q&A with the physician as well.

I’m wondering what topics would be interesting to all of our Migraineurs out there. We’d like to create a presentation that would be engaging and relevant for Migraine Health Activists.

Are there specific topics around Migraine that you’d like to learn more about? What would be a “can’t miss it” presentation for you? Let us know by leaving a comment, or joining the conversation on WEGO Health!

Spotlight: Endochick
Website: Endometriosis: The Silent Life Sentence

Twitter: @Endochick
Blogging since
: March 2007
: Freelance Writer, Freelance Correspondent for a local paper, an Aspiring Novelist, and a Part-Time Head Teacher at a Day Care. Above all, I’m also a mommy to two wonderful little kiddies

What made me start blogging?
I began blogging mainly as a cathartic exercise. I had no one in my community to talk to who had endometriosis and who could identify with what I was going through—and I needed an outlet to “unload.” My mother had had endometriosis, but her hysterectomy at 28 left her disconnected and unable to help me. My husband had been through so much with me health-wise and I didn’t want to drag him through yet another emotional medical journey.

So as a writer and someone who enjoys journaling to work through her troubles, I opened a blog. I began cataloging my experience of being diagnosed with endometriosis as well as a very frightening mammogram. Eventually, I moved my blog over to and began getting a plethora of responses from women just like me. These women were my age, younger, even older! I couldn’t believe it–I wasn’t alone! They were thanking me for being so honest and raw with my language and for really capturing what it feels like to have endometriosis. And I realized my blogging wasn’t just for me anymore, it was for all of us “endo” girls. My blogging became a mission to help spread endometriosis awareness and education, as well as still being an open book into my life as an endometriosis patient. I do this with the hope that other women who have the disease, or suspect they may have it, will not have to feel alone as I once felt.

What motivates you in your writing?
My pain motivates me. It reminds me that life is short and that no amount of pain is going to stop me from living every last minute of it. I often write through the pain.
My readers also motivate me. Without them I would be writing into an empty void with no one to bounce my ideas off of. Their comments are often inspirational and I enjoy them so much!

Who do you admire in the Endometriosis community?
I really admire Jeanne from (formerly Jeanne’s Endo Blog). She’s an inspiration for women with endometriosis and other chronic illnesses. During the month of March (Endometriosis Awareness Month), Jeanne created the hash tag #endo for Twitter and had it placed in the Twitter Hash Tag dictionary. It’s use in now widespread on the social networking platform. Also during this month, I instituted the phrase for use on endometriosis blogs and Twitter: “March Blogging Madness for Endometriosis Awareness.” And Jeanne was instrumental in helping to circulate this catchphrase. Jeanne is always willing to come to the aid of a friend, endometriosis sufferer or not.

What are the most common questions people ask you – and what do you tell them?
I get asked about my experience a lot and I often tell them my personal account—how I was diagnosed, etc. But I reiterate to each individual that the time it takes to be diagnosed is different for everyone. The only way for endometriosis to be diagnosed definitively is by laparoscopy. This diagnosis takes, on average, 9.9 years. During this time, doctors may “suspect” that you have it, which was my case for years. They can “suspect” and treat you to an extent all they want. But to be diagnosed one way or the other is important.

I’m also asked how I deal with co-workers, family, friends, and people who just don’t understand the pain I’m going through with my endometriosis. This is a difficult thing to deal with—people who don’t “get it.” It would be easier if we had broken bones, or even cancer. People could see our casts or our hair falling out from the chemo—and they would sympathize with our pain. But when the pain is so internal, so deeply hidden in our wombs with no external reference point for others to identify with, it makes it almost impossible for them to understand.

My answer is—you can’t make them understand. They will never understand because they can never walk in our shoes. But take two people with endometriosis—they can look at each other and they just know. They know each other’s pain and they don’t even have to describe it. They know the cramps, the bleeding, the cysts, the adhesions, and the endless pain. They just know. And, while you can’t make other people “understand,” you can educate them.

The more people we educate about endometriosis—in the work place or in the world—the more we will be taken seriously by our co-workers and loved ones. Endometriosis isn’t simply a “bad period,” as non-sufferers believe. And we need to get that word out. We need to band together, with those who understand our pain, to get that accomplished. We are not a minority; after all, according to the Ohio State University Medical Center, endometriosis is more common than both AIDS and cancer. That makes endometriosis patients a majority, a strong majority of 89 million women worldwide. When we combine, we can get our voices heard.

What would you most want to say about your condition to someone who doesn’t have it?
We are not drug-seekers—we are actually in pain. We are not lazy—we are prone to sitting on the couch in a puddle of tears because our insides are bleeding. We don’t need your pity—we need your honest, compassionate support. We don’t need or expect that you will understand what we are going through. We need you to understand that you never will. We just need you to acknowledge that the pain isn’t a specter, an imagined thing come to haunt us, or something we created in our minds. We need you to acknowledge that we are not “making the pain up,” not receding into tiny balls of tortured women every month in a desperate cry for attention. We just need you to acknowledge that our pain is real—even if you can’t feel it or see it.

What is your favorite health-related resource?
That’s a tough one! I have so many health-related sources I use. I would point readers to, though. I read the articles and use their little quizzes and tools often. It’s a great site and health source, full of wonderful references. I even have their gadget on my iGoogle homepage so I can receive a current feed of articles from

Learn more about Endochick
Follow Endochick on Twitter

Who inspired you? Contact us and tell us who we should feature in our next Spotlight Interview.

I would love to see everyone make safe sex choices and reduce the number of unplanned pregnancies and abortions. And I love educating people about their birth control choices and having seen firsthand how these decisions affect all of our lives.

Where to find her: Contraception since 2007 and on Twitter @Dawn_Stacey
Occupation: Writer, Advocate, Professor, Stay-at-Home Mommy

How did you first become interested in contraception, family planning, and other women’s health issues?
While pursing my Masters degree, I did an internship at Planned Parenthood that later turned into a full-time job. Through Planned Parenthood, I had the amazing chance to experience real-life struggles and joys in the area of reproductive health. I witnessed both births and abortions—so I can truly describe what to really expect during these times. This introduced me to the world of activism and how important it is to advocate for women’s health issues. Ever since, my passion for contraception and family planning has only grown.

What motivates you in your writing?
I believe that all individuals have the right to manage their fertility and should have access to accurate birth control information. I am passionate about contraception and its importance. My advocacy is what truly motivates me.

I would love to see everyone make safe sex choices and reduce the number of unplanned pregnancies and abortions. And I love educating people about their birth control choices and having seen firsthand how these decisions affect all of our lives.

Who do you admire in the women’s health community?
Though she is no longer around, Margaret Sanger, in my opinion, is the epitome of reproductive health advocacy. I admire all the work that she did to pave the way to where we are today.

What are the biggest trends you see around birth control?
It seems that there has been a renewed interest in IUD use (either the Mirena IUD or the ParaGard IUD). This makes me happy since IUDs have gotten a bad rap in the past. Also, a lot of people as me about extended-cycle birth control pills. These are pills that allow a woman to manage how often she has her period. For example, Lybrel is a pill that is taken every day, so a woman can have no periods. And Seasonique is designed so that a woman only has a 4 periods a year. These are great options for women who have terrible symptoms with their periods. Plan B, emergency contraception, is also a very popular trend right now.

What are the first three tips you tell people who are trying to select a new form of birth control?
People need to know that having sex is about making choices. We choose: our partners, when we’re ready to have sex, when to wait, and what we feel comfortable doing. Now we can finally choose to have sex in the safest way.

When choosing a method, people should factor in a few things: how effective they want the method to be, how convenient, and what type of method would fit into their lifestyle best so that they will be more likely to use it. Also, are they even a candidate for this method? What are the health risks?

What is your favorite health-related website?
That’s easy… mine! One thing that I love about my contraception site is that I created the whole thing—it was my concept. When I began writing for in 2007, there was no contraception site. I was hired to build it from the ground up, so I have personally written every article and blog entry found there.

All my articles are full of accurate information and licensed medical doctors medically review them. So people can know that, without a doubt, the information I am providing is correct. (So much online info about birth control is not correct).

I also try to write in a way that people can understand since these topics can be fairly complex. My website is a wonderful platform to share my knowledge and my understanding of the personal issues that surround birth control use.

What is your favorite health-related book?
I have two – “Taking Charge of Your Fertility: The Definitive Guide to Natural Birth Control, Pregnancy Achievement, and Reproductive Health” by Toni Weschler and “Our Bodies, Ourselves by Boston Women’s Health Book Collective” by Judy Norsigian

Is your writing/project therapeutic?
Very much so. It is wonderful to know that I am helping people make very important decisions. After all, look at what is at stake if people make the wrong decisions about their contraception—pregnancy. The topics that I write about are really life-altering.

Words cannot capture the feeling I get when people tell me, via their emails, how much I have helped them or given them clarity. When I find my writing cited elsewhere on the web, it is a true testament to my job and my mission!

To connect with Dawn, visit her WEGO Health page.

This week on WEGO Health Loves: Running a hospital

Don’t worry, we’re not looking to get in to the hospital business, we just really enjoy reading Paul Levy’s blog, Running a hospital.

Levy is the President and CEO of Boston’s renowned Beth Israel Deaconess Medical Center. His blog offers a surprisingly transparent look into the inner workings of a large teaching hospital.
He shares everything from nurse Tere McCarthy’s monthly birthday cakes for the OR staff (Go Red Sox!) to internal budget reports sent to hospital staff.
He addresses some of new ways hospitals around the country are using social media (like live-Tweeting surgeries), recognizes employees, and even shares some poems written by caregivers.
And that’s all just in the past few months. Levy has been writing “Running a hospital” since 2006.
There are a lot of amazing Health Activist blogs out there, and certainly no shortage of excellent caregiver blogs either, but patients and doctors don’t exist in a vacuum. “Running a hospital” is an excellent blog for anyone looking to add another point of view to their reading about medicine, health, and healthcare.
Wondering what other sites we love?

“I wanted to hear about real life scenarios instead of sterile advice from medical sites…I wanted the next mom who got the peanut allergy diagnosis to find me and know that it is going to be ok, really, truly it is.”

Where to find her: Peanut Free Mama
I’ve been blogging since 2002. I started a personal blog in 2002 at Gab’s House o’ Sass, then I started a blog for my daughter in 2004 which evolved into my current blog (where I devote most of my writing).
Occupation: I manage the marketing department of a scientific publisher in Northern California.
Why “Peanut Fee Mama”?
When my daughter was diagnosed with a peanut allergy, I really felt that I absolutely had to live peanut and nut free as well. Partly as a sign of solidarity, but also I didn’t want to run the risk of causing a reaction by something I ate. So when I created a blog to document the journey we were on, “Peanut Free Mama” seemed like a natural choice.
What made you start your blog?
When my daughter was about 18 months old, she ate a tiny bit of toast (about the size of a pea) with peanut butter on it. Within minutes, her eyes were swollen, her face was covered in hives, and her nose was running. It was awful! Once we had an official diagnosis (and not much else, except for an epi pen prescription), I started on a journey to find as much information as I could via my own research online. I came up empty handed alot! I wanted to hear about real life scenarios instead of sterile advice from medical sites. I started my blog to show how a regular mom was dealing with a peanut allergy and trying to give their child a normal life. I wanted the next mom who got the peanut allergy diagnosis to find me and know that it is going to be ok, really, truly it is.
Are there other places that we can find you on the web?
You can find me on Facebook and on Twitter.
What has been the hardest part about dealing with your child’s peanut allergy for you?
Two things:
First: Trust. Trusting that whoever is watching your child (be it at daycare or school or babysitting) REALLY understands the ramifications of her allergy. It doesn’t matter if it’s family or not, it’s hard to trust another person with your child’s care when they have a special need like this. I’m not worried about my daughter eating peanuts or peanut butter directly. I AM worried about her trusting an adult who doesn’t know how to read a label (or wont bother to).
Second: Mortality. There’s nothing more sobering than facing your child’s mortality at an early age. Sure most parents deal with general fears about their kids getting hit by a car or talking to strangers. But having a child with a food allergy that involves anaphylaxis makes you think about your child dying. A lot. It isn’t fun.
What do you think is the hardest part about dealing with the peanut allergy for her?
She’s just starting to get that she can’t have many of the things her friends have. She doesn’t cry about it, but I can sense the frustration of it. She also isn’t enjoying sitting at the “allergy table” at school. I think she’d be happier if we came up with another solution once she’s in Kindergarten this fall.
What do you wish non allergic parents understood about food allergies and allergy parents?
We’re not doing this to them. We’re not asking them to refrain from sending in nutty treats to school or checking a food label to make their lives difficult. They have the luxury of sending their child off to school or a playdate without wondering if they’ll come home (literally) or not due to something they may have inadvertently ingested. If we could make this allergy business go away, we would!
What do you think is the most important thing a parent of a newly diagnosed food allergic child should know?
You aren’t alone. It gets easier. Day by day you’ll get used to this and after a while this will all be second nature and (dare I say it?) a non-issue for you.
To connect with Gabrielle, visit her WEGO Health page.
This Spotlight Interview was conducted by Janeen, one of WEGO Health’s Community Leaders and author of Our Story: The Good, The Bad, and the Food Allergies, a blog about raising children with food allergies.

This Week on WEGO Health Loves: Twitter

No really, we do. Seems like everyone is talking about Twitter these days and everyone has an opinion about how best to use it. Though there is one thing we really love about Twitter – the people!

We’ve met some many wonderful health folks, including:

And those are just a few! Please visit our growing community – there’s something for everyone, migraines, food allergies or something different all together there’s a Health Activist there offering tips, treatment options and support.

Do you love Twitter as much as we do – or simply want to know what all the buzz is about? Then why not join us for our encore webinar presentation of Twitter Power Tools for Health Activists next Thursday, July 9th 8PM to 9PM ET.

“Twitter Power Tools for Health Activists” is the second in a series of webinars designed to help you make the most of your Twitter account. During this 45 minute presentation, we’ll give you a guided tour of some of the most useful third party twitter applications to help you save time, reach more tweeps, and take tweeting to the next level. Register now!

New to Twitter, then be sure to check out Twitter Fundamentals for tips on how to get started.

Please note that all archived webinars to be available soon for WEGO Health members. Stay tuned or register to be notified.