Blog

Month: July 2009

Have you joined a Group?

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!

We Love: Frozen Pea Fund

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?

Alzheimer’s News is Good News

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

 

Seeking Migraine Webinar Topic Ideas

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

Spotlight: Endochick
Website: Endometriosis: The Silent Life Sentence

Twitter: @Endochick
Blogging since
: March 2007
Occupation
: 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 blogger.com 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 wordpress.com 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 ChronicHealing.com (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 WebMD.com, 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 WebMD.com.

Learn more about Endochick
Follow Endochick on Twitter

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