Apr24

A Blog, About a Blog, About Fragile X

blogFragile X is not a code name for someone I was in a relationship with. It’s a syndrome. Don’t feel bad, I didn’t know what the heck it was either. Nor did my sister when her 17-month-old son was diagnosed with it. Now hold that thought—we’ll come back to this…

Presented with the opportunity to submit a blog entry at work, I pondered a vast array of potential topics. I thought a lot about blogs themselves. I thought a blog (entry) about blogs was an interesting approach. I jotted down a list of blog-related questions I had, thinking they might send me down an insightful path…

How many are there? How many are focused on healthcare? What’s the official definition of a blog? When was the first blog created? What are the Top 10 blogs? What do people most commonly blog about?

I found answers to all of my questions and then some. The blog statistics are staggering.

There are between 152 million and 230+ million in total (although I was unable to find exactly how many focus solely on healthcare). The term “web log” was coined by Jorn Bargeron December 17, 1997. The short form, “blog,” was coined by Peter Merholz, who jokingly broke the word weblog into the phrase we blog in the sidebar of his blog Peterme.com in April or May of 1999. There’s a lot of debate about the Top 10 blogs, and there are many Top 10 lists of blogs organized by different topics: http://www.blogs.com/topten/

Now for the most staggering statistic: I read that there is a new blog created somewhere in the world every ½ of a second. That means there are 172,800 blogs added to the blogosphere every day. And apparently 409 million people view 14.7 billion pages of blogs, each day!

There is no topic you can think of that you will not find a blog dedicated to. Try it. I did.

My blogstorming then led my brain to think about blogs that inspire me. That was easy. The most inspiring blog I’ve ever come across is penned by my very own sister, Cara. Cara has endless inspiration for her blog. My nephew Hayden is Cara’s “supermodel-esque son who just happens to have a genetic disorder which affects his brain.” This brings us back to the real matter at hand—Fragile X and raising awareness of it.

As the parent of an almost 9-year-old with Fragile X, my sister believes there are two kinds of people in this world: those who know what Fragile X syndrome is and those who do not. Hayden’s milestones followed a timeline of sitting up when most kids crawl, crawling when most kids walk, and walking when most kids begin toilet training. At 17 months, a blood test confirmed Fragile X syndrome. Hayden has learning difficulties, exhibits behavioral challenges, sensory issues, hyperactivity, and also…an unbelievable memory, a charismatic personality, and his most prominent feature is definitely his smile.

Cara’s blog is “awareneXs”—spelled with an X, because that’s what she wants people to become aware of. Read more about the origination of the blog, and Hayden’s diagnosis, here: http://awarenexs.blogspot.com/2011/05/why-may-of-2011.html.

So, challenged with the question of what to blog about, I take the opportunity to raise the awareness of Fragile X, and introduce you to my amazing nephew Hayden. If you’re not already part of those 409 million people who view blogs every day, this one might make you part of the statistic. At a minimum, it will swing the pendulum my sister sees a bit more toward the side of “people who know what Fragile X syndrome is.”

Read more about Fragile X and Hayden at http://awarenexs.blogspot.com/.

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Apr15

Mindfulness: An Age-Old Concept in a Bright, Shiny New World

yoga officeIf you asked others to define mindfulness, you’d likely hear a variety of responses, the most common of which might be relating the term to a Buddhist concept. Mindfulness indeed originated thousands of years ago, and for those who conceptualize it this way, a quote from the well-known author Thich Nhat Hanh illustrates the point well. He said, “Walk as if you are kissing the earth with your feet.” Too esoteric? This is far from the only interpretation of the word.

A more practical and relevant definition for business is simply: awareness. We all know full well the challenges in today’s environment, particularly within the rapidly evolving healthcare space. The digital age isn’t coming, it’s here, but all of its obstacles and opportunities are still being pulsed out over time as we answer some questions and then inevitably raise more. As if our own world isn’t changing quickly enough, that of our clients is right there beside it, equaling if not outpacing the transformation we’re experiencing. One of the keys to all of this—to recognizing the hurdles and also to overcoming them—is mindfulness (yes, that 2,000+ year old practice).

Mindfulness facilitates a more complete view of what’s around us. It compels us to consider our immediate and long-term challenges, and the resources we have available to address them. But it also encourages us to put ourselves in the shoes of our clients, to become more connected to (in other words, aware of) their work climate, and that always makes for better, more creative and insightful work.

But it is more than just awareness. Going back to the more obscure definitions, it’s about being supremely present, the result of which is the ability to recognize beauty and connectedness in the world. The more of that we see, the more impassioned we become and the more driven we are to contribute to it—through our work, but also through our hobbies, our families and our friends.

So let’s make a pact to be more mindful and to reap the rewards, personally and professionally. Become more familiar with and aware of your working environment and that of your clients, work after hours at home and even monitor those devices as needed, and you will be a better, more valuable professional for it. But when the job is done, continue to practice that mindfulness by being fully present and invested in whatever you’re doing after work. It helps us all, even those who love every waking second of their job, to unplug and recharge. There are few things that clients love—and need, especially in today’s healthcare landscape—more than an eager and fresh perspective ready to confront their most formidable challenges.

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Also posted in agency life, behavior change, Creativity, Health & Wellness, Personal Reflections | Tagged , , , , | Leave a comment
Dec4

Fighting the Stigma of Mental Illness

Even with our medical knowledge of the neurobiologic causes of mental illness, prejudice and discrimination against people with mental illness is not decreasing (according to a study published by Indiana University and Columbia University).

The World Health Organization (WHO) reports that there are 450 million people worldwide who suffer with mental illness but fewer than half receive care (caused by limited resources and stigma). While the WHO is taking action, by assisting governments with better access to healthcare and training healthcare workers to recognize the signs of mental illness, the WHO cannot fight stigma alone.

Many people with mental health concerns hide their illness or decide not to seek help because of what others “think.” They are often plagued with shame and agonize over with whom to share (family, friends, colleagues) their diagnosis. Worst of all (in my opinion), people with mental illness often “self-stigmatize” (internalize the public’s perception) and limit the amount of success they think they can attain or deserve.

Could you imagine how different our lives and nations would be if society knew that Abraham Lincoln or Winston Churchill had a mental illness? Or worse, if these two men held themselves back because they felt they didn’t deserve to succeed?

Mental illness is no different than any other illness, but because it manifests in the characteristics that make us human, it is more difficult to understand and often feared. In some cultures, superstition also contributes to how people are treated or viewed among a productive society.

So what is the tie-in with why I picked this blog topic and Fast4wD Ogilvy? Fast4wD has been at the center of global communications for clinical research for the past 10 years. While our therapeutic area of expertise is broad, the majority of our business has fallen under CNS. In addition, since 2003, my career has coincidentally focused on mental health research. I say coincidental because several of my immediate family members and very close friends have struggled with these concerns. I’ve learned a lot through my personal and professional experiences, but the most heartbreaking learning I’ve had is that a double standard exists. From a scientific and medical professional perspective, the “support” is there (just look at the list below of common or well known disorders currently open on ClinicalTrials.gov), but the dialogue behind the scenes isn’t always very nice or compassionate when it affects the immediate business.

ClincalTrials.gov lists the following open clinical trials:

  • 2005 depression trials
  • 1505 anxiety disorder trials
  • 594 schizophrenia trials
  • 475 ADD and ADHD trials
  • 472 eating disorder trials
  • 351 post-traumatic stress disorder (PTSD) trials
  • 296 bipolar trials
  • 158 trials listed collectively for obsessive compulsive disorder (OCD), panic disorder and Tourette’s syndrome

As the National Alliance on Mental Illness (NAMI) says, “Stigma erodes confidence that mental disorders are real, treatable health conditions. We have allowed stigma and a now unwarranted sense of hopelessness to erect attitudinal, structural and financial barriers to effective treatment and recovery. It is time to take these barriers down.”

We can start by looking for ways to help make a change.

  • Be compassionate and be careful of what you say:
    • “Tard”
    • “Psycho”
    • “Did you take your meds today?”
    • “Just snap out of it!”
  • Participate in a nonprofit like NAMI at some level:
    • Memberships
    • Volunteering your time
    • Join fundraisers (walks, runs, etc.)

My challenge to you is to add to my list above of how we can help make a change. I want to hear from you.

 

 

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Also posted in Advocacy, behavior change, clinical trials, Health & Wellness, Healthcare Communications, Patient Communications | Tagged , , , , , | Leave a comment