Saturday, June 20, 2009

I was just blown away...

Another Cushie, Robin (staticnrg), submitted an abstract to Medicine 2.0

Robin's abstract was submitted and accepted!  WooHoo!  I was blown away by the subject of her abstract.  Someone pointed out to me that everything was true but still...

Wow!  Will we go?  We'll see!  It's a big expense for the conference alone plus travel.  On the one hand, I can see not going and I would be scared and terrified to go.  On the other hand...what an opportunity.

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

On the Message Boards

Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.

This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).

An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.

This year's conference will be held in Toronto, Canada and will be attended by

  • Academics (health professionals, social scientists, computer scientists, engineers)
  • Software and Web 2.0 application developers
  • Consultants, vendors, venture capitalists, business leaders, CIOs
  • End-users (health professionals, consumers, payors)

Thursday, June 4, 2009

Holy Moley!

I've always had a lot of moles.  They run in the family.  When I was going to my prom, the only comment my grandmother made when I showed off my dress was that I'd "inherited the family moles".

I had a bunch of them cut off while I was in college and it was free to do through the infirmary.  When I moved here, I found a doctor who would give a group rate for 5 or 10 removals.

A couple weeks ago, maybe a little longer, I noticed that a mole on my neck seemed to be flapping a bit.  I have this really great purse that I love and the strap comes in about that area so I assumed that the mole was irritated by that.  Then, I noticed a red lump underneath and it was a bit itchy.

Even my husband noticed this mole and recommended that I go to his skin doctor.  I looked him up and he's a plastic surgeon.  I was afraid if I went to him, he'd want to redo my face!

So, I decided to go to my GP to see if he could remove it (he removed a piece of glass from my foot once) or give me a referral.

So the doctor says he can see this thing from across the room.  I sat on his little table for a closer look.  Turns out my "mole" was a tick.  I've had a tick sucking my blood for at least 2 weeks!  No wonder I've been feeling more tired than usual.

He removed the tick and he - the tick - is sitting in a jar on my dining room table.

I had a Lyme Disease titer and we'll see on Monday if I need to change the name of another blog to Cushing's, Cancer & Lyme.  I sure hope not!

As Gilda often said - "It's always something!"