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Interviewing Health Activists: Cherise, Founder of Diabetes Social Media Advocacy Chat (#DSMA)
Dec 16th
WEGO Health: Thanks so much for taking the time to share with us, Cherise! You’re doing great things for the online Diabetes community – what’s your personal background with Diabetes?
Cherise: I was diagnosed with Type 1.5/LADA (Latent Autoimmune Diabetes in Adults) in June of 2004 at the age of 23. When I was first diagnosed I was shocked. I cried. The Nurse Practitioner held me and told me it would be ok. I called my Mom and of course I cried some more. My husband was in Iraq when I was diagnosed so I had to figure out how to live with diabetes on my own; I put a lot a faith in God and the internet. I did not know a lot people with Type 2 or Type 1 and never heard of LADA. What was LADA? What can I eat? What can’t I eat? Carb counts? And the list goes on and on. Once I figured what LADA was and I could live with it. I was able to breathe! I try not to get emotional about having diabetes but every once in a while it has a way of trying to find the emotional button and turning it on but I quickly turn it off.
WEGO Health: What is "#dsma" and how did it start? What made you take this leap?
Cherise: #dsma (Diabetes Social Media Advocacy) is a weekly twitter chat about diabetes.
I started #dsma based off the #hcsm chat that Dana Lewis moderates on Sunday evenings. I wanted to make a patient-based chat for the diabetes online community and I knew she would be able to offer some insight. After, I spoke with her and a few other people in the diabetes community. I knew in my heart that #dsma twitter chat would be a perfect way to show support for one another, advocate for diabetes using social media, and help spread awareness for diabetes.
WEGO Health: What was the feedback from the diabetes community? From the greater online medical community?
Cherise: I am so thankful and blessed the Diabetes Online Community (D-OC) supported #dsma from the beginning. The D-OC is what helped #dsma become what is today. I get a lot of positive feedback from the D-OC via blog postings and twitter. I have grown as a Patient and Advocate. You can edit a blog but you can’t edit a tweet; the raw emotion from someone in 140 characters is powerful and very empowering. I have not received any feedback from the greater online medical community.
WEGO Health: Yet! The #dsma chat is actually a great model for leaders of other health conditions to follow - we will certainly point anyone interested in starting a chat for their condition your way for a great example of what to do!
How important is connecting with other people with diabetes, in your opinion, and how does it help improve your own diabetes health and well-being?
Cherise: Connecting people with diabetes is very important to me because I was always the “only” one. I had support from my husband and family but there are times when they did not understand. Diabetes can be a very lonely disease; no one should have to live with diabetes alone. We all may treat our diabetes different but when it comes to the emotional, physical and mental side of diabetes someone in the diabetes community can relate.
I have learned a lot about living with diabetes from reading blogs, participating in diabetes online community and on Twitter. There are 5 things that I have taken from the community and that have helped my well being and diabetes health- 1. It’s not my fault. 2. Be patient 3. Every day is different 4. Diabetes is manageable even when it seems like it’s not. 5. I am not alone.
WEGO Health: Do you consider yourself a Health Activist? Why or why not?
Cherise: Yes, I consider myself a Health Activist. I believe in helping, supporting and advocating for people living with diabetes. I believe in educating those who do not understand diabetes and fighting for people who deny People living with Diabetes the proper care they deserve. The only difference is I do not march or picket; I will if I have too. I use social media as a tool to discuss issues around the world and around the diabetes community.
WEGO Health: How can people get involved with #dsma?
Cherise: You can participate in #dsma every Wednesday night at 9PM EST, the diabetes community, family members of PWD’s and caretakers get together once a week to participate in #dsma on twitter. The topics vary from questions on living with diabetes, media, food, infusion sites, meters, and more. If you would like to participate in Diabetes Social Media Advocacy (#dsma) it's easy to do: follow @diabetessocmed or the hash tag #dsma, please make sure you add the #dsma to your tweets. If you have a question or a topic to submit you can visit http://www.diabetessocmed.com/ and go to the submit topic tab-you can also find previous #dsma chats and transcripts at http://www.diabetessocmed.com/.
WEGO Health: Thanks Cherise! You're a great example of how to use Twitter to really take advantage of an awesome online community! We look forward to seeing more of the great work you're doing for the online Diabetes community.
Health Activist Vlog Contest: Update!
Oct 21st
- Noah Ohlsen, fitness blogger at The Pursuit of Fitness, used our contest as a stepping stone into vlogging and shared some of the great ways that video can help illustrate fitness strategies in his video: FFVV (First Fitness Video Vlog)!
- Elder Care and Aging Health Activist Anthony Cirillo, who blogs at Who Moved My Dentures?, shares his personal story in his vlog: Why I'm a Health Activist
- Video entrant Glenda Bateman, posted by Make Women Matter - a campaign to improve the lives of women and put an end to preventable deaths related to pregnancy and childbirth, shares a personal story of Health Activism
- Ade, Sickle Cell Health Activist and founder of sikcell.ning.com, shares his personal Health Activist journey and some moving member stories in his vlog entry: Why I am a Health Activist for Sickle Cell
- Paul Winter, ME/CFS Health Activist and long term vlogger, uses his video: Why I am A Activist for ME/CFS Sufferers to share his own story and the benefits of using video
- In Persistence & Determination!, Diabetes Health Activist and Health and Chronic Illness Specialist Ginger Vieira tells us why Health Activism is so important and why each of us should be our own advocate
- Dani Z, vlogger at Dani Z World and Mental Illness Health Activist, shares the impact of video on her Health Activism and in breaking the stigma associated with Mental Illness in her video: Raising MI Awareness Through Video
Spotlight on Rachel Baumgartel, Diabetes Daily
Jul 15th
Active in the Diabetes community: since 2008
Occupation: Accounting Clerk, Freelance Writer
What made you start your blog/contribute to the diabetes community?
Writing has been a part of my life for as long as I can remember, so writing about diabetes came naturally. I had been seeking out information on both forms of the condition following my Type 2 Diabetes diagnosis in March 2005, which happened only a few months after my husband (T1 since 1986) experienced a seizure due to hypoglycemia. Along the way, I discovered a rather small diabetes blogging community. The first annual D-blog day was held November 9 of that year and I joined the ranks of diabetes bloggers on that day to tell our story.
What did it feel like to be officially diagnosed with Type 2 Diabetes?
Being a few weeks short of my 29th birthday, it was disheartening to be diagnosed at an earlier age compared to most people with Type 2 diabetes. As I joined online message boards, I realized how lucky I was to be diagnosed relatively early on in the disease process with only slightly elevated blood glucose and no complications - so many people are not diagnosed with Type 2 diabetes until a complication arises.
What has most surprised you about having Type 2 Diabetes?
I feel healthy most days. By cutting down on processed carbohydrates and exercising several times a week, not only have I improved my physical health, but also my mental health.
What areas of diabetes research have you most excited right now?
Whenever there is a study that shows the positive effects of using insulin for management of Type 2 Diabetes, that pleases me. There are too many negative connotations associated with insulin in the Type 2 community and any studies that prove otherwise could change minds therefore saving lives.
The growing evidence that Continuous Glucose Monitoring Systems (CGMS) are effective in maintaining steadier blood glucose in Type 1 Diabetes. This should make insurance coverage easier to obtain for these systems.
What motivates you to continue writing about diabetes?
Writing about diabetes is a coping mechanism. Even if I struggle to write a blog post about it, I might be Tweeting about the last workout I did or how frustrated I am with fasting blood glucose readings or offering support to others. While I appreciate page views and comments and personal e-mails regarding blog posts, I still write to cope with my own everyday Type 2 Diabetes experiences.
Who do you most admire in the diabetes community online?
Kerri at Six Until Me - Kerri offers insight into my husband's world with Type 1 Diabetes as well as inspires me to stay physically active.
Becky at Tales of Princess Mikkimoto - Newly diagnosed in March of this year, watching Becky change her lifestyle enthusiastically due to Type 2 Diabetes has rekindled my own desire to stay healthy after some health concerns unrelated to diabetes.
What advice do you have for those newly diagnosed with Type 2 Diabetes?
You do not have to change your entire lifestyle overnight. Small steps are important - cutting processed carbohydrates gradually and starting an exercise program slowly are the ways to make the Type 2 Diabetes lifestyle change stick. Also, self-monitoring of blood glucose allows for trial and error in finding out what lifestyle changes best work for you. It is an important tool in any diabetes regimen, even when treating Type 2 Diabetes with only diet and exercise.
Be sure to check out Rachel's WEGO Health profile, and welcome her to the community!
Interested in learning more about Type 2 Diabetes? Join the WEGO Health Group.
Wanted: Volunteers, All Pregnant
Feb 16th
The woman sent by government scientists visited the Queens apartment repeatedly before finding anyone home. And the person who finally answered the door - a 30-year-old Colombian-born waitress named Alejandra - was wary.
Although Alejandra was exactly what the scientists were looking for - a pregnant woman - she was "a bit scared," she said, about giving herself and her unborn child to science for 21 years.
Researchers would collect and analyze her vaginal fluid, toenail clippings, breast milk and other things, and ask about everything from possible drug use to depression, At the birth, specimen collectors would scoop up her placenta and even her baby’s first feces for scientific posterity.
She ultimately decided that participating would “help the next generation.”
Chalk one up for the scientists, who for months have been dispatching door-to-door emissaries across the country to recruit women like Alejandra for an unprecedented undertaking: the largest, most comprehensive long-term study of the health of children, beginning even before they are born.
Authorized by Congress in 2000, the National Children’s Study began last January, its projected cost swelling to about $6.7 billion. With several hundred participants so far, it aims to enroll 100,000 pregnant women in 105 counties, then monitor their babies until they turn 21.
It will examine how environment, genes and other factors affect children’s health, tackling questions subject to heated debate and misinformation. Does pesticide exposure, for example, cause asthma? Do particular diets or genetic mutations lead to autism?
But while the idea is praised by many experts, the study has also stirred controversy over its cost and content.
In August, the Senate committee overseeing financing for the study accused it of “a serious breach of trust” for not disclosing that the initial price tag of $3.1 billion would more than double, and said the study needed to release more information if it wanted to get “any” financing in the next budget year.
And an independent panel of experts and some members of the study’s own advisory committee say it misses important opportunities to help people and communities — emphasizing narrower medical questions over concerns like racial and ethnic health differences, leaving unresolved crucial ethical questions concerning what to tell participants and communities about test results.
“This study is of the magnitude of the accelerator in CERN, or a trip to the moon — a really big science issue,” said Milton Kotelchuck, a professor at the Boston University School of Public Health and a member of the independent panel. “But if you have a flawed beginning, then you’ve got 20 years of working on a flawed study.”
Officials are making changes, putting all but the pilot phase, to involve 37 locations, on hold while conducting an inquiry into the cost and scientific underpinnings, Dr. Collins said. Some data may no longer be collected if “we can’t afford” it, he said, and every aspect will receive “the closest possible scrutiny.”
The study is far from its plan of recruiting 250 babies a year for four or five years in each community. By December, 510 women were enrolled and 83 babies were born in the first seven locations, including Orange County, Calif., and Salt Lake County, Utah.
That was after knocking on nearly 64,000 doors, screening 27,000 women and finding 1,000 who were pregnant and in their first trimester (and therefore eligible).
The time and information required from families could also make the study “too burdensome to be conducted the way it is,” said Dr. Susan Shurin, former acting director of the National Institute of Child Health and Human Development, part of the National Institutes of Health and the study’s supervising agency. The fear is women will “go ‘Oh no, you again,’ and slam the door in your face.”
Specimens include blood, urine, hair and saliva from pregnant women, babies and fathers; dust from women’s bedsheets; tap water; and particles on carpets and baseboards. They are sent to laboratories (placentas to Rochester, N.Y., for example), prepared for long-term storage, and analyzed for chemicals, metals, genes and infections.
Participants provide the names and phone numbers of relatives and friends, so researchers can find them if they move. As children grow, scientists, including outside experts, can cross-reference information about their medical conditions, behavioral development and school performance.
Besides looking at widespread conditions, like diabetes, the study will consider regional differences. Maureen Durkin, principal investigator in Waukesha County, Wis., wonders if radium in the county’s water, and houses built on “farm fields that may be contaminated with nitrates and atrazine,” have different health consequences than pollution or industrial chemicals in Queens.
But study officials are trying to determine what information to give participants and when. Some experts say people should get results of their chemical or genetic tests only if medical treatments exist because otherwise it only causes anxiety. Others agree with Patricia O’Campo, a member of the study’s advisory committee and the independent panel, who says the study should be “less ivory towerish” and disclose more information to families and communities.
SourceNatural Delivery OK in Cases of Intrauterine Growth Restriction
Feb 5th
Waiting for natural birth is as effective as inducing labor in pregnant women with intrauterine growth restriction (IUGR), a new study shows.
IUGR, which affects about 10 percent of pregnant women, means that the fetus is much smaller than normal. At birth, these babies are more likely to have low blood sugar, an abnormally high red blood cell count and trouble maintaining their body temperature. These babies are also at increased risk for jaundice, infections and cerebral palsy.
Later in life, people who were restricted-growth babies may be more prone to behavioral disorders, obesity, heart disease, type 2 diabetes and high blood pressure.
Currently, doctors have two main approaches for women with suspected IUGR who are nearing delivery. Some doctors induce labor because they're concerned about complications, while others await natural delivery.
This study compared the effectiveness of the two strategies among 650 women in The Netherlands. The researchers found that median birth weight was significantly lower among babies born after induced labor (2,420 grams) than among those in the spontaneous delivery group (2,560 grams). Both groups of babies had similar rates of adverse post-delivery outcomes.
The findings show that waiting for birth is equally as effective as inducing labor, the researchers concluded.
SourceBirth Weights Are Falling in U.S.
Jan 21st
Mothers are giving birth to lighter babies in the U.S., and no one is quite sure why.
This finding, published Thursday in the Journal of Obstetrics and Gynecology, has potentially troubling public-health implications, if the trend continues. Low-birth-weight babies are at higher risk for a host of health problems.
Between 1990 and 2005, the birth weight of full-term babies in the U.S. declined nearly two ounces to an average of seven pounds and 7.54 ounces, a reversal of a trend that had seen birth weights climb steadily since the 1950s, according to the study. They were also born 2.5 days earlier on average in 2005 than in 1990, the study said.
The decrease in weight—based on an analysis of nearly 37 million non-multiple births from a national database—isn't likely to affect the health of the average baby in the study, according to researchers. But the data showed a 1% increase in the number of the lowest-weight babies and suggested the birth-weight decline didn't stop in 2005.
These data suggest that it may be important for medical professionals to pay attention to the weight of babies born around 37 weeks and 38 weeks, as well as those considered pre-term, or less than 37 weeks, according to Joann Petrini, senior adviser at the March of Dimes and assistant research director at Danbury Hospital in Connecticut, who wasn't involved in the study.
Researchers also found a 2% decrease in the number of babies considered large—those over the 90th percentile of weight for gestational age—which is a positive, according to Dr. Oken. Large babies can experience more birth trauma and cause more birth injury to the mother.
The lower-birth-weight trend could not be explained by common factors like how much weight mothers gained during pregnancy, whether the delivery was induced or by cesarean section, prenatal care, or common maternal-health issues such as smoking and hypertension, researchers said.
Researchers also repeated their analysis in a sample of low-risk women—healthy, educated Caucasians in their mid-to-late 20s—and found that the decrease in birth weight was even more pronounced, suggesting that the trend isn't the result of changes in the population of mothers.
Other investigators also have begun to note the same trend. "There's no question" about the change in birth-weight pattern, said Michael Kramer, scientific director of the Institute for Human Development and Child and Youth Health at the Canadian Institutes of Health Research, who wasn't involved in the study.
"It is a new trend," he said. "We really don't know why the birth weight has decreased." A similar pattern has been observed in Canada, he said.
Some potential factors that weren't examined in this study include better control of gestational diabetes—when a mother develops diabetes during pregnancy—and more physical activity during pregnancy, said Dr. Kramer.
Babies considered too large, as well as too small, tend to have more health problems in the long run. The optimal size for a newborn is around 4,000 grams, or roughly 8.8 pounds, according to Dr. Kramer. The average baby in the study was found to be smaller than optimal. In 1990, the average birth weight was 3,441 grams, and in 2005 it fell to 3,389 grams, according to the study.
Babies born too small tend to have higher blood pressure and a greater risk of diabetes in the long run, said Dr. Oken.
From the 1950s until the 1980s, birth weights had increased as a result of increases in mothers' weight and how many pounds they gained during the pregnancy, as well as reduced smoking and older maternal age, according to Dr. Kramer.
SourceSiblings key in pregnancy-related diabetes risk
Jan 13th
Women with a family history of diabetes who are free from the disease themselves are more likely to develop pregnancy-related diabetes, a new study confirms.
And the risks associated with having a brother or sister who is diabetic are much higher than having one or even two parents with the disease, Dr. Catherine Kim of the University of Michigan Medical School in Ann Arbor and her colleagues found.
The increased demands placed on the body during pregnancy can cause some women to develop abnormally high blood sugar. The condition, known medically as gestational diabetes, typically gets better after a woman delivers her baby, but it increases her risk of developing type 2 diabetes later on.
The more relatives a person has with type 2 diabetes, the greater their risk of developing the condition themselves. But little is known about how a woman's family history of the condition affects her risk of developing gestational diabetes.
To investigate, Kim and her team looked at 4,566 women participating in the National Health and Nutrition Examination Survey, all of whom had at least one child. Ninety-seven percent had never been diagnosed with diabetes, about 1 percent had gestational diabetes only, and 2 percent had type 2 diabetes.
Having a mother or father with diabetes increased the likelihood of having diabetes or gestational diabetes to a similar degree, the researchers report in the American Journal of Obstetrics and Gynecology. But while having two parents with diabetes boosted the likelihood of having diabetes eight-fold, this only doubled the likelihood of gestational diabetes.
On the other hand, having a diabetic brother or sister increased gestational diabetes risk more than seven-fold, but only slightly upped type 2 diabetes risk.
"The odds of increased most markedly when a sibling was affected," Kim and her team write. And when the researchers accounted for early-life factors such as education and poverty, the risk associated with having a diabetic sibling actually increased. "Sibling-only history may be a greater risk factor than previously documented," they say.
The findings suggest, the researchers say, that gestational diabetes may follow a different pattern of inheritance than type 2 diabetes, which is closely associated with being overweight or obese.
Further investigation of these patterns could help identify women who are at particularly high risk of developing type 2 diabetes after having the gestational form of the condition, they add, "and thus target them for future prevention interventions."
SourceUltrasounds to be shown live to fathers via iPhone
Jan 11th
The new technology, which transmits video images via the 3G mobile phone network, was unveiled at the Consumer Electronics Show in Las Vegas.
Dr Topol, chief medical officer of the West Wireless Health Institute, which promotes the use of mobile phone technology in healthcare, demonstrated the technique by broadcasting images of an ultrasound examination in Sweden.
He said the new technology was designed to send ultrasound videos to doctors, friends and family, but could even be used to broadcast the examination to “Facebook, Twitter and the whole social networking scene”.
Dr Topol also showed the crowd an Apple iPhone application designed to allow doctors to check the vital signs of patients from any location.
Dr Topol said mobile phone applications have been developed to spot the early warning signs of the top ten causes of hospitalizations in the US, including Alzheimers, breast cancer and diabetes.
He said the technology had the potential to save hundreds of millions of dollars by allowing doctors to act pre-emptively and avoid expensive hospital treatment.
“These things are empowering consumers to take charge of their health,” he said. “You know how we check our emails? Next year we will be sitting here with a Band-Aids on checking our vital signs.”
SourceInducing labor may lead to more C-sections
Jan 7th
Dr. J. Christopher Glantz at the University of Rochester School of Medicine found that inducing labor introduces a risk of 1 to 2 cesareans per 25 inductions that might have been avoided by waiting for spontaneous labor to begin.
While this risk to individual women is not particularly large, Glantz told Reuters Health that 1 to 2 cesareans per 25 inductions can quickly add up to tens of thousands of unnecessary cesareans over the course of millions of inductions.
While the procedures have become more common, C-sections are major surgeries, and carry risk of infection, bleeding, blood clots, and injury to other organs, Glantz emphasizes in a report in the journal Obstetrics and Gynecology.
The researcher analyzed birth certificate data for some 38,000 women from 13 hospitals in the Finger Lakes region of New York State from January 2004 to March 2008. He excluded women with scheduled or previous cesarean deliveries, or who had come to the hospital with ruptured membranes.
While previous studies have already shown that induced labor increases the risk for cesarean, Glantz examined how that risk might shift given a redefined comparison group.
He examined C-section rates after induction using three comparison groups: a week-by-week comparison of women induced to labor compared with those delivering spontaneously; women induced at a chosen week compared with women who delivered spontaneously after that week; and women induced at a chosen week compared with women who delivered spontaneously on or after that week.
In a nutshell, the study found that all labor induced groups faced increased risk for C-section, except for those women delivering after 39 weeks.
Glantz advises that pregnant women and their doctors may be better off waiting for spontaneous labor. "Try to reserve interventions for situations where risk outweighs benefit," said Glantz, such as in cases of diabetes, high blood pressure, problems with the placenta, a baby that is not growing well, or a woman being 10 days past her due date.
SourceChinese and Korean-American Women Have Increased Risk for Diabetes During Pregnancy
Dec 14th
Chinese and Korean-American women are at a higher risk than Caucasian and African-American women of developing diabetes during pregnancy, according to a new study. The study, by researchers at Kaiser Permanente, also found that Pacific Islanders, Filipinos, Puerto Ricans and Samoans were also at a higher-than-average risk of developing diabetes during pregnancy, while Caucasian, native-American and African-American women have a lower than average risk.
Untreated diabetes during pregnancy can lead to complications to the women and fetus. It can also lead to the child becoming obese later in life, the researchers said in a statement.
According to the study, as many as 10 percent of women of Chinese and Korean descent could be at risk of developing the disease during pregnancy.
The study is published in the journal Ethnicity and Disease.
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