Samantha’s Story: Finding CLL Community in Unexpected Places

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Topics include: Patient Stories

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. 

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Esther Schorr:

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.  

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.  

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?  

And seeing people here at the different stages of the disease was at first scary for me.   

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Page last updated on July 18, 2018