Published on June 26, 2018
In one remarkable, unforeseen instance of serendipity, patients can be brought together to receive support from others who have been in similar situations. Need proof? At the CLL Live conference in Niagara Falls, Canada, Patient Power founder, Esther Schorr is joined by patient advocate, Samantha to get her perspective on the value of patient communities for those living with cancer. After living with chronic lymphocytic leukemia (CLL) for over eight years, Samantha shares her experience meeting another CLL patient for the first time while vacationing in Ecuador, finding community in unexpected places, and the impact connecting with others has had on her cancer journey. Can the stories of others make a difference in your care? Watch now to find out.
Transcript | Samantha’s Story: Finding CLL Community in Unexpected Places
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Hi there. This is Esther Schorr with Patient Power. I'm coming to you from Niagara Falls, Canada, and I'm here at the CLL Live conference which happens every three years or so. And Andrew and I have the opportunity this year to be part of sessions. I ran a care partner session yesterday, and Andrew has just finished being on a panel for CLL chronic lymphocytic leukemia patients.
And we are so lucky to have our new friend, Samantha Bonio with us. And the quick story is that Samantha and Andrew and I met in the mountains of the Andes in Ecuador just a few weeks ago. And, Samantha, just explain in brief how we met.
Sure. I was in Ecuador in a tiny little village called Isanlibi at a hostel, and we were having dinner. We were discussing doing some hikes the next day, and I had said I hope I'm going to be able to do that hike tomorrow to Andrew, because I have chronic fatigue from a health issue. And he said, oh, what type of health issue do you have? And I said well, you've probably never heard of it. It's a blood disorder called CLL.
And the look on his face, he said, I have CLL, and then he proceeded to tell me about Patient Power. And I immediately broke down into tears, because I had never met anybody with CLL before, and I couldn't believe that this was all happening in the Andes in Ecuador. And then he told me that there was a conference coming to Canada, and I live an hour away from where this conference is happening, so I'm here today.
So for those of you who believe in fate, there you have it, and for those of you who don't, there it is anyway. So we're really thrilled that Samantha was able to come, and this conference is one that it's held in Canada every few years, and there are 300 chronic lymphocytic patients here along with many of their care partners.
And really what I want to do is just talk to Samantha and have her share what is—since before meeting us and before being here you really didn't know much about CLL, and certainly didn't have a community of support of people who were going through different parts of that journey. So what are you getting out of being here? What has it helped you? What insights have you gotten?
Well, it definitely makes you feel like you're not alone. When I was diagnosed about eight years ago I was only 35, and I never really discussed it or did any research on it. I kind of just swept it under the rug. When I learned about this conference and in coming here, I met so many other people from all different walks of life, all different ages, and it just—the information that we have been given here by the doctors and the nurses and the other practitioners has really helped educate me and makes me feel better prepared for the if. If I'm going to need treatment, what will I be looking at?
And seeing people here at the different stages of the disease was at first scary for me.
But then afterwards in talking with them, you were able to understand that this could be something that you might face in the future so talking to somebody else who is going through it gives you reassurance.
So what are you going to take away from this? What will—will there be something different in the way you manage your everyday life that has come out of this, or what's the immediate impact for you, do you think?
For me, I think that just the fact that I'm not in the dark anymore, and coming here I have met so many people, doctors and different practitioners and a lot of resources, places like Patient Power and other groups on the Internet that where we can come together and lean on each other and learn from each other.
Great. Well, we couldn't ask for much more than that. So I just—Andrew and I thought that this would be a great story to share. We're just thrilled to have Samantha part—we don't all want to be part of this community, but we all want to be part of this community and support each other. So just wanted to thank you, Samantha, for sharing your story.
Thank you. Pleasure.
And from Niagara Falls it's Esther Schorr and Samantha. And we know that knowledge can be the best medicine of all.