My friend and colleague, Alicia Cole, is a hard fighting, ardent supporter of keeping patients safe.

You may know Alicia, if not by name, by face.  A Hollywood actor for many years, Alicia was going great guns in her career - until she required surgery for a medical problem, and was infected with necrotizing fasciitus - the flesh-eating bacteria - post surgery, while recovering the hospital.

Today, when she's not in therapy or dealing with her continuing infection problems, you'll find her tirelessly supporting and promoting patient safety, with a focus on preventing hospital acquired infections.

Now she's asking you to join the fight by helping to spread awareness through a Facebook Campaign...  Just download one of the posters found at the Patient Safety ASAP or Alliance for Patient Safety Awareness sites, snap your photo holding it, and upload it to Facebook for your friends to see.  You can suggest they go to any of the Facebook pages to learn more about being safe, too.  THAT's how to spread the awareness and help people stay safe as they access their healthcare.

Here are the Facebook pages where you can participate:

•  Patient Safety ASAP

•  Alliance for Patient Safety Awareness

If you want to know more about the issues, the dangers and what you can do to protect yourself and your loved ones:

•  The National Quality Forum's 28 Never Events

•  MRSA and Other Superbug Infections

•  Prescription Drug Errors Take Lives

Have you suffered from a medical error?  Why not tell us more about it.  We can all learn from others' experiences about how to prevent mistakes from being made on us.

The whole idea behind patient safety is to keep ourselves safe.  Just like looking both ways before you cross the street - you never anticipate a problem, but if you're prepared and take steps to prevent problems, you'll be a whole lot safer.

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When my friend Nancy was diagnosed with alopecia, her doctor wanted her to begin taking steroids.  Alopecia causes all your hair to fall out, everywhere (yes, everywhere) on your body - the top of your head, your eyebrows, your legs - yes, everywhere.  And steroids have some really difficult and uncomfortable side effects.

She was desperate.  She asked me, "What am I supposed to do?"

My advice to Nancy was to go online, find support groups, forums or message boards of others with alopecia - and see what kinds of things they are talking about. They could help her figure this out and would support her as she made her decisions.

Over the years, I've made that suggestion to dozens of people.  Support from others who deal with similar problems to ours, whether we attend in person or online, can be a HUGE help as we go through difficult times.  The support group concept has been around for years and years for everyone from alcoholics and gamblers,  to overeaters, to grief support when a loved one dies... so why not find support for our difficult diagnoses, symptoms, treatments or even patient empowerment?

I've never heard back from anyone I've made the suggestion to, to learn whether those support groups turned out to be helpful.  Maybe they worked. Maybe they didn't...

Until today, when I found this article about a new Pew Research study that says 20% of those who go online for health information, do so specifically to find help from their peers.

[Yay! That study is not just useful information, it's personally rewarding to me to know that some of you might have listened to the advice! ]

Getting involved in an online support group can make a huge difference not just in the care and treatment we get for our medical problems, but in the ways we cope and learn to overcome, too. Particularly for some of those problems that are either difficult to diagnose, or difficult to cope with - support from peers can be huge.

Two resources for you today:

1.  Do you participate in an online support group?  Has it helped you? (or maybe not?)  Please share your experience with health and medical related online support groups with us.

2.  See what reviews have been written for other support groups.

2.  Never tried an online support group?  There are some pros and cons, and a few cautions to share with you.  Learn more about participating in online support groups.

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Photo © Microsoft Image Gallery

As regular readers know, I encourage all of us, as empowered patients, to learn as much as we can about a doctors' ability to help us by researching his or her credentials like board certification, licensing, even their malpractice track records.

Recently I've decided I need to spend more time on Facebook.  Many of you know I already spend quite a bit of time on Twitter.  The benefit to spending time on both is that I get to know you all better, many readers ask me great questions through these sites, and of course, because it's just plain fun!

It occurred to me that just as we patients are spending more and more time on sites like Facebook, Twitter, YouTube and others, so are doctors, nurses and other healthcare workers. When I engage with physician friends on Twitter, I find them really being themselves - for better AND worse.

One day last week I decided just to observe the things they said.  Several shared articles about frustrations they have with patients.  Others shared articles they had found that provide good advice for doctors who want to improve their relationships with patients.  One doctor, an orthopedist, blogs and vlogs (video blogs) advice to patients - and he does a good job.  He provides links to his blog and vlog posts on Twitter.  Another one, a pediatrician, often tweets things that just floor me.  She has one of the foulest mouths (or is that keyboards?) I've ever seen online.

Based on those descriptions, can you guess which ones I would want to choose if I needed to choose someone who provided their types of services?

So it occurred to me that social media gives us all tools for getting closer to finding the right doctor for us.  Of course, its not necessary to choose every doctor we need to see based on personality or attitudes.  But for any doctor we will have a long-term relationship with - like primary care doctors, or endocrinologists or cardiologists and others - it makes perfect sense to let personality and attitudes be part of your decision-making.

So I put some material together to help you ferret out what your doctors - or potential doctor choices - may be saying through social media.  Hope you find these useful!

•  Using Social Media to Choose Your Doctor

•  What You Can Learn about Doctors Through Social Media Sites

•  How to Find Doctors Using Social Networking Sites

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See if any of these descriptions sounds familiar to you:

• You (or a loved one) have had trouble getting a diagnosis.
• You have been told that your symptoms are "all in your head."
• You have been treated many times, but none of them seem to work, except maybe to mask your symptoms.
• You have been misdiagnosed.

These challenges and others may be your experience because you have a rare disease.  A rare disease, also called an "orphan disease" is one which has so few identified sufferers, that doctors may not know about it to diagnose or treat it, researchers aren't doing much, if anything, to improve treatment possibilities, and little, if anything, is known about preventing it.

These rare diseases have names that are either unpronounceable, like Leiomyosarcoma, Chuvash Polycythemia or Serpigenous choroiditis. Or they have been named after the doctor or researcher who finally defined them, like Wilson's Disease, Fabry's disease or Von Hippel-Lindau.

Worse - there are probably dozens, if not thousands, that have never been named - meaning patients are either misdiagnosed, undiagnosed or being treated only to mask their symptoms, not really control their medical problem.

Inspire.com has put together a freely downloadable e-book full of patient stories about their rare diseases. If any of those descriptions above describe your situation, or that of a loved one, you'll want to take a look.  You may find someone describing your experience. It may help you get diagnosed.

•  Learn more about rare diseases and find additional resources to help you get the diagnosis and treatment you deserve.

•  Download Inspire.com's e-book of personal stories by patients with rare diseases.

Rare Diseases Day is recognized around the world on the last day of February.  Hopefully this recognition can help you, or help you help someone else, who has been suffering, but so far has not received the treatment needed.

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