May 30th, 2013
Announcing the First Annual 2013 Community Choice Awards!
In partnership with ExL and the Digital Health Coalition, WEGO Health is excited to announce the first annual 2013 Community Choice Awards!
The Community Choice Awards will recognize the healthcare organizations, teams, and individuals that are finding new ways to provide tangible value to online patient communities. Nominations are open from now until September 15th. Winners will be announced at Digital Pharma East from October 15 – 18 in Philadelphia!
Check out the awards below and nominate now!
- Best Branded Campaign: This award recognizes a pharmaceutical organization and a device company finding new ways to create value within the online social health community, while educating patients and caregivers about their specific product.
- Best Unbranded Campaign: Awarded to a pharmaceutical organization and a device company that has developed a truly unique offering to the social health community and bridging the communication gap between patients and caregivers.
- Best Mobile Health App: Presented to the organization, agency, or technology partner with the most innovative mobile app in the healthcare industry, making a difference in patient and caregiver’s lives.
- Community Hero: Given to an individual who works in the healthcare industry and is establishing valuable relationships within the world of social health, making a difference in others’ lives.
- Best Non-Profit Partner: Given to a non-profit organization who is actively partnering in the online health community and providing resources and opportunities for the industry to help patients and caregivers.
- Company of the Year: Honors a healthcare company that stands out in its commitment to the community, putting patients first with transparent consumer-centric programs and outreach.
May 24th, 2013
The Wit & Wisdom of Neurotransmitters: A Layperson’s Guide to Psychiatric Drugs
Today’s guest post comes from author David Blistein. Make sure to visit our Facebook page to win a copy of his new book!
In order to have intelligent and mutually respectful dialogues with scientists and practitioners, health advocates need to understand the medical as well as the sociological impacts of a specific disease. But, as medical science becomes increasingly complex, it often feels like we’re hanging on for dear life in those discussions! This is particularly challenging in the field of mental health, because most professionals themselves don’t have a complete understanding of how various medications and modalities work.
Medications—including supplements and herbs—work on depression in many different ways. By having a basic grasp of these processes, we can be both better health advocates and consumers. Don’t worry…I’ve never taken a biology, anatomy, or chemistry class in my life. If I can understand it, you can.
This explanation is based on the “neurotransmitter” model. Most doctors and psychiatrists use this model—in conjunction with symptom-based criteria—to decide which medicine to prescribe. (An acupuncturist, on the other hand, might give you herbs based on the strength or weakness of your “meridians.” Other alternative practitioners might talk about energy fields. Hippocrates would have been concerned with your black bile.)
From this neurochemical perspective, brains are filled with cells called neurons. In order to do their jobs, neurons are constantly transmitting and receiving information (via an electrical impulse) by using special messenger molecules called neurotransmitters, such as serotonin, norepinephrine, and dopamine. When neurotransmitters from one cell connect with a receptor on another cell, it’s called a synapse. Scientists consider this connecting a lock-and-key process. I think it’s more like speed-dating.
Hormones, by the way, are also messenger molecules…except they travel through the bloodstream. Just about everything you experience in your body involves both. That’s why the endorphins you release when you go for a bike ride can make your mind “clearer.” And thinking about sad things can make you “heart sick.” I’m oversimplifying of course—which is lucky for both of us!
To keep the information flowing from cell to cell, a neurotransmitter has to leap across a synaptic cleft (space between neurons) and hook up with an appropriate receptor molecule.
Many things can go awry in this process which can make you feel more sad, happy, lethargic, wired, and a million variations thereof. There are six main ones:
- Your neurons aren’t making enough neurotransmitters; or specific kinds of neurotransmitters.
- A lot of your neurotransmitters are kind of lazy. Instead of leaping across the synaptic cleft they retreat back into the neuron.
- The enzymes that are supposed to process the neurotransmitters after they’ve successfully synapsed, devour them before.
- Certain receptor molecules just aren’t in the receptive mood. One of the things doctors never seem to tell patients is that there are many different kinds of receptors—about 15 for serotonin alone! All of which are connected with different information systems. That’s why all the serotonin in the world won’t help if key receptors are over- or under-activated. It’s also why one Selective Serotonin Reuptake Inhibitor (SSRI) might work better for you than another.
- You have having similar messenging problems in your hormonal system.
- Who knows?
Most medications focus primarily on one of these processes, although there tends to be a lot of crossover.
- Nutritional and herbal supplements are usually precursors—i.e., they provide neurons with the raw materials they need to make neurotransmitters. Amino acids, B-vitamins, St. John’s Wort, 5-HTP, and SAM-e fit into this category.
- Selective Reuptake Inhibitors (SRIs) make sure more of those lazy neurotransmitters stay in the synaptic cleft long enough to do their job. For example, An SSRI such as Prozac or Zoloft blocks the reuptake of serotonin. An NDRI such as Wellbutrin works on norepinephrine and dopamine.
- Monamine Inhibitors (MAOIs) such as Nardil keep those voracious enzymes from eating neurotransmitters before they’ve hooked up with a receptor.
- Some medications also target specific receptors to make them more (agonist) or less (antagonist) receptive.
- Hormonal medications affect receptors in order to minimize the effects of hormonal changes such as hot flashes or osteoporosis.
- Drugs such as Lithium and Depakote and a slew of “atypicals” are often prescribed successfully for bipolar and various other mixed states, although no one is quite sure why they work. (The first antidepressant, Imipramine was discovered when they were looking for a cure for tuberculosis. It didn’t work on TB but sure cheered up the patients!)
Lately, new developments in psychiatric medicine are providing a deeper understanding of these systems and leading to new forms of treatment: There are medications that are able to more precisely target specific receptors. There are magnetic therapies that stimulate certain specific part of the brains. There are even new nutritional supplements that deal with genetic mutations which make it difficult for neurons to make neurotransmitters. And, recently, President Obama announced a bold new initiative to map the human brain in the same way that the Genome Project mapped our genes. Which could lead to major breakthroughs in neurochemistry.
Dealing with mental illness, however, is not an exact science—and I suspect it never will be. Until it is, patients and advocates need to keep asking questions. And then ask them again. And again. Before swallowing that pill, we have the right to know what our doctor thinks is going on “up there.” Before we accept a change in policy, we deserve to understand why.
***
David Blistein is a novelist, essayist, and former advertising agency executive whose writing is the culmination of a lifelong pursuit of wisdom, transcendence, and humor. His works-in-progress include books and blogs that present thought-provoking perspectives on psychology, history, philosophy, and more. For more information, see www.davidblistein.com.
His new book, David’s Inferno: My Journey Through the Dark Woods of Depression, is available at your local bookstore or Barnes & Noble.
May 17th, 2013
Suffering in Silence: Addressing the Social Stigma of Fistula
The following guest post is from Kate Leisner of Women and Health Alliance International.
As we spend National Women’s Health Week empowering women to make responsible health decisions, particular attention needs to be drawn to an often overlooked barrier to women’s care: the social stigma of obstetric fistula. Ever year, thousands upon thousands of women are abandoned by their families and friends because they suffer from this curable and preventable condition. In developing countries, fistula is rarely met with proper treatment, and instead is met with shattering social isolation and castigation.
Fistula is prevalent in low-income countries, particularly in sub-Saharan Africa, due to inadequate healthcare during pregnancy and childbirth. It develops after prolonged labour – also a high contributor to child mortality– and leads to chronic incontinence. The condition, misunderstood but so many, is often misconstrued as a sign of infidelity, uncleanliness, or punishment.
Women with fistula become outcasts in their own homes and are shunned by their spouses. Some men blame their wives for developing fistula and respond with insults and abuse. Those supported by their children or parents find the assistance scant and short-lived. Caring for a woman with fistula poses a high financial burden and the smell and waste becomes uncontrollable. Moved into a secluded room, sometimes outside of the house and without even a bed, these women became estranged from their families. They are excluded from communal meetings and are unable to find work. Eventually, even friends stop visiting.
“My home life is really stressful,” said Chantal, a woman who suffered from fistula in Cameroon. “I live between the shower and the sofa. My personal life is over: I had a second-hand clothes business, I sold shoes, but I can no longer do this. I was extremely embarrassed. People rejected me, especially people in the market. I stopped working.”
In communities that already severely devalue women, this burden becomes unbearable.
Thinking that there is no cure for their condition and feeling too embarrassed to seek help, these women suffer for years in silence.
To combat these widespread misconceptions of fistula, Women and Health Alliance (WAHA) International is engaging in fistula awareness campaigns throughout Africa. Our goal is to heighten health education and mobilize maternal health advocates in order to create communities receptive and supportive of maternal care issues. Reducing fistula is only achievable once the social stigma is dissolved and the word gets out: developing a fistula is not a woman’s fault. Radio announcements, SMS campaigns, and conferences are helping communities understand how and why fistula develops and, more importantly, that it is curable.
“Now I realize that I am not alone. Many women suffer in silence. My life will return, with the help that WAHA has given me,” said Chantal. She received treatment at WAHA’s fistula treatment camp in Yaoundé.
WAHA International carries out fistula treatment, hospital renovations, medical training, and awareness campaigns in over 20 countries.
May 15th, 2013
Health Activist Interview: Shane Kinard
Today is Tuberous Sclerosis complex (TSC) Global Awareness Day. Following is an interview with Shane Kinard, a Health Advocate, CEO and Founder of TheVoicesof Tuberous Sclerosis, and Volunteer at The Tuberous Sclerosis Alliance.
Tell us about the experience of finding out your daughter had TSC 25 years ago.
We were devastated when we first found out our first child, Kristen, had TSC. My wife and I were just married, 18 years old and knew little about raising a child, especially a child with a rare disease.
We knew something was wrong almost right away but it was very frustrating to have doctors repeatedly tell us we were just being overly cautious. After going to a bigger hospital she was diagnosed with TSC at age one after having 80-100 “infantile spasms” or seizures a day. We had never heard of TSC.
The doctors said Kristen would be mentally delayed, autistic and have physical problems as well. We decided to get her the best care available and to do our own research. At that time it meant heading to the library. There was very little information, and I didn’t understand what little I could find so I made a promise that I would understand everything for the sake of my daughter.
Slowly and surely I did, even correcting a few doctors along the way. Kristen is 25 now, she is delayed, but can walk, talk, read, write and is a very loving and happy young lady!
How were you diagnosed with TSC?
In 2010, I had an accident and was taken to the hospital for a scan of my abdomen – I will never forget the ER doctor coming in and saying “you have renal cell carcinoma.” I was 41.
They wanted to remove part of my kidney so we got, a 2nd opinion. Again, I was told I had renal cell carcinoma, and that the mass was huge and needed to be removed quickly. I then went for a third opinion, this time I was told I was riddled with cancer OR I had TSC. After many tests it was determined I had TSC2 or Mosaic TSC but the tumor in my kidney still needed to be removed. The surgery was horrible, I almost died, but they did remove the tumor and I began my own journey with TSC.
How did the challenges effect your family?
Now that we know my daughter has the genetic component of TSC we feared one of our other children might carry the gene. With the best scientific knowledge available at this time, we have been told, to our relief, that our other 2 children don’t have TSC. Still everyone has to deal with the fact that I had it too. I really feel bad for my children, the possibly losing their Dad at such at such a young age or at least knowing I had a very rare disease that has no known cure is hard on them. It is also devastating to me that I am the one putting them through this.
The positive is, it explains a lot! Hindsight is truly 20/20. With my background, knowledge and ability to bring people together and communicate I can have a much better, more positive impact on the TSC Community as a whole. Now I can, and I am, truly making a difference!
What is the history behind your Facebook pages?
The history behind my Facebook pages is deep rooted in the many years of me asking myself, “What can I do to help my daughter and the Tuberous Sclerosis community?”
Not being a doctor or a scientist, what can I do to make a positive difference? I always had an interest in computers and their potential, but it was not until I was diagnosed with Tuberous Sclerosis in 2010 and started writing about my journey with TSC that I saw the following that could be created through social media. Once I saw that people were interested in what I was going through with my daughter, a light bulb went off and I started my main site, TheVoicesof Tuberous Sclerosis in 2010. To my surprise it seems to have fulfilled a need and is now the second largest TSC page on Facebook.
The next page I created was Tuberous Sclerosis Together as One and again people responded positively. Not too long after that, my wife ask me to start one for her after seeing my success and that is how the Spouseof Tuberous Sclerosis began. I was contacted through one of my sites by a woman who mentioned losing a child to Tuberous Sclerosis Complex and she said that TheVoicesof Tuberous Sclerosis page was so helpful because it was personal. She asked if I would start a page for those that had lost loved ones with Tuberous Sclerosis. I immediately agreed and Tuberous Sclerosis Never Forgets was born.
In addition to having TSC, I am also a parent of a child with TSC. I’m in a great position to relate to people and earn their trust. I am grateful that the pages seem to help so many and has given them a safe place they can go, with people who can relate. That is something I was looking for myself.
What is the one thing you wish people understood about TSC?
What I wish more people understood about TSC is that we matter, we want respect, and our opinions to carry weight! Inclusion is important. My personal dream is to continue to learn as much as possible and be an educational/motivational speaker for the TSC community.
People are looking for leadership they can trust and a voice they can relate to I recognized this need and have been organizing and motivating people as well as giving them hope. In return their support and confidence in me has given me hope. We are meeting a need that maybe has not been seen and met.
I believe with the proper support and encouragement much could be accomplished together.
Shane Kinard can also be reached on Twitter at @TheVoicesofTSC.
May 7th, 2013
Patient Summit USA Recap from That M Word!
Migraine Health Activist Emily of That M Word attended the Patient Summit USA conference in Philadelphia last week on behalf of the WEGO Health Press Corps.
She recently posted an excellent recap of the conference that we’d like to share with you! The goal of the conference was to explore patient issues from adherence and communication to engagement and education and give providers better insight on how they can meet patient needs.
You can also read Emily’s tweets from the conference and follow her on Twitter: @emilymword
May 3rd, 2013
Texting for Knowledge: Making a Difference for Pregnant Women and Babies
Today’s guest post comes from Sarah Ingersoll of txt4baby.
Did you know that the infant mortality rate in the United States is higher than most developed countries? Many preventable factors contribute to these negative outcomes including lack of access to prenatal care, negative health behaviors such as smoking or substance abuse, poverty, and unsafe sleep for baby. Ensuring that pregnant women are well informed about their pregnancies, connected to available health resources, and getting prenatal care can help. That’s why I’m proud to be a part of the text4baby initiative, the largest and only free health text messaging service in the U.S. for pregnant women and new moms.
Text4baby is a free SMS health and safety information service that delivers three text messages per week through pregnancy and baby’s first year, timed to mom’s due date or baby’s birth date. Women sign up by texting BABY or BEBE (for Spanish) to 511411 and entering their due date or the child’s birthday and zip code.
Since launch, over three years ago, we have reached more than half a million moms and delivered more than 60 million health tips, reminders, and critical alerts via text message. I would like you to join the text4baby initiative and help connect more moms to this free service. Thanks to Johnson & Johnson and CTIA – The Wireless Foundation, the service and promotional materials are entirely free.
Why should you help? Text4baby has been proven effective and over 95% of users say they would refer a friend. A University of California and California State University study showed that text4baby is “increasing users’ health knowledge, facilitating interaction with health providers, improving adherence to appointments and immunizations, and strengthening access to health services.”
Likewise, a George Washington University randomized evaluation found that text4baby participants were “nearly three times more likely to believe that they were prepared to be new mothers compared to those in the no exposure control group.” By letting all the moms you know learn about text4baby, you’re equipping them to give their babies a healthy start. Together, with the over 860 national, state and local partners who are promoting text4baby, we can have an impact on maternal child health in the U.S. I look forward to working with you!
We encourage everyone to join the conversation! Text4baby is on Facebook and on Twitter @mytext4baby.