Just recently I had the opportunity to attend the CLL LIVE gathering in Niagara Falls, Ontario, Canada. I was a speaker there and it was a thrill, really, to meet several people I only knew from the Internet.
I began connecting with other people with chronic lymphocytic leukemia (CLL) online exactly 16 years ago when I was first diagnosed with the disease. Over the years I have read posts from hundreds of people around the world. In Niagara Falls I got to meet a few of them in person. It was like meeting old friends. While there I interviewed several and we will begin posting these interviews on Patient Power soon. As you would expect, experienced patients and partners are vocal patient advocates. They are believers in a “patient power” movement where it is essential 1) you become savvy in your disease 2) you strongly advocate for the most up-to-date-care for your specific situation and 3) if you are stymied by a provider or a system, you do your best to find other options.
I came away from meeting these folks energized, and encouraged. As we become veteran patients talking to patients we become wiser. What was so cool at the conference was how that wisdom was welcomed by so many other patients for whom the diagnosis is new. They were eager to learn of the right resources and to connect with people who had made the journey before them.
Around North America now these sorts of conferences are going on more often. Greg Stephens with The National CML Society is leading them in chronic myelogenous leukemia while Scott Seaman from the Chicago Blood Cancer Foundation is focusing on several blood cancers. Patient Power is working with a Columbus, Ohio organization, MMORE, to produce town meetings for myeloma. In non-malignant conditions like PKU and eosinophilic disorders there are annual gatherings attended by patients from around the world.
I used to be someone who thought everything could be done online. That the connection we make there was enough. But these days I see its limits. Our online connections as patients – our own version, if you will of Match.com – is the start and often the sustaining connection. But like the Match.com couples, you have to meet at some point. And for us patients, that can be so rewarding.
If you have Internet buddies, I urge you to find a way to meet. When I was first diagnosed and went online I asked in a posting, “Is anyone here from Seattle?” Several people were and we started meeting for lunch. I still meet so many years later with my local CLL buddy, Pat.
Talking to former NHL player, Paul Henderson with his CLL Specialist, Ronan Foley
Thanks to the Canadian CLL Patient Advocacy Group for putting together such a wonderful event and providing the opportunity to meet with so many positive folks – including top specialists like my doctor, Michael Keating. Look for interviews coming soon with some online greats including Susan Leclair, a lab test expert; Chaya Venkat, the queen of powerful caregivers and science mavens; and Paul Henderson, the well known former Canadian NHL player who is living well with CLL.
I’ll see you on the Internet and, if I can, someday also in person.