This AS Life Live! is the first interactive online talk show for people with ankylosing spondylitis (AS) by people with AS.
The program is a collaboration between the Spondylitis Association of America, Novartis Pharmaceuticals Corporation, and Dan Reynolds.
The goal of the series, hosted by Dan Reynolds, AS patient and lead singer of the Grammy award-winning rock band Imagine Dragons, is to inspire and encourage people to live their best lives with AS and to raise awareness of AS. Imagine Dragons has a large USA and international fan base with extensive tours, TV appearances, awards and hits including Radioactive, Demons, Believer and Thunder.
With just the first 3 video interviews released in 2017, This AS Life Live! has reached over 500 million people on social media, and through print, broadcast, and online news coverage.
"Each person's story is unique. As we release more and more of these interviews, I hope that everyone living with AS will find something they can relate to and find value in watching and sharing. Dan has truly been wonderful throughout the series. He is friendly, thoughtful, empathetic, candid, lighthearted, just real." Rich Howard
SAA receives no government funding and relies on the
generous donations from individuals to create and maintain the programs and
services aimed at improving the futures of the 2.7 million Americans affected
By Helgi Olafson
Thursday, February 09, 2017
Helgi talks with Imagine Dragons lead singer Dan Reynolds for This AS Life Live!, a series that brings together people with ankylosing spondylitis (AS) to share stories, help inspire each other, and live their best lives.
Dan Reynolds: So you're you're actually professional chef? You're not just like a guy who does this as a hobby? This is your profession?
Helgi Olafson: Yeah, I'd say so. I've been doing it for 17 years. I've always done it, and actually I think it's great to have been a chef because I'm upright. I have AS. I can focus on good posture. I'm not sitting at a desk.
DR: When did you first start to feel that something was wrong? How long did you live with it before you actually went and sought treatment?
HO: I had my first bout when I couldn't roll over a bed in the morning. It lasted about six months until I got diagnosed. But during that period, it was misdiagnosed with sciatica.
DR: So when you went to the doctor –– which I think is really common –– they misdiagnosed it?
HO: Because, you know, AS is not common knowledge.
DR: So are there any foods in particular that you had to cut out of your diet because it made the AS worse?
HO: You know, I don't think that there are any that I've had to cut out. Definitely cut back on –– you know –– greasy food and things like that.
But I think it's really important to –– if something's not working in your body, then change it.
Also everybody has a different level of progression, which is a huge deal. Because some people –– I mean, you look at me and you. We don't look like we have AS. But we have AS.
DR: I take that as a compliment. Thank you. I'm like, "Oh yes. Of course, I don't look like I have AS."
HO: Yeah, right. See. Good, good.
DR: So, Helgi, you eat healthy. You exercise. What other advice you have for someone like me who has AS?
HO: Well, I think it's really important for people to use useful information out there. There's a lot of people who have AS that you can connect with and share. Share each other's stories and — you know — offer support.
Also, I think it's very important that people consult a rheumatologist because they have knowledge about the disease. And they can point you in the right direction and potentially offer solutions that could make more successful with your AS.
DR: I'm excited about this. Typically, the smoothies that my wife makes me are only vegetables. So this looks much more sweet than what I'm used to.
HO: Well she's going to be happy because I'm putting some more kale in it.
DR: Oh, great. Give me a recap of what's in it.
HO: OK. So we've got strawberries, blueberries, pineapple, orange, kale, full-fat yogurt, honey, and almond milk.
DR: If you could describe with your experience with AS in one word, what would it be?
HO: Probably... "enlightening".
DR: How so?
HO: I feel like there's some kind of power that I have with this disease to really make the right decision with my life or make the wrong decision with my life.
DR: So, if AS had a face and was sitting across the table from you, what would you say to it?
HO: I'd say "thanks." Because it's given me the opportunity to live a life of inspiration. And I don't take it lightly — what I have. And I feel like I'm carrying a torch for people who can't necessarily carry a torch.
DR: Wow. I mean that's something pretty good. Because I would have a lot of other things to say to my AS. But you seem to be a pretty optimistic guy. I think that's incredible. I feel like there's a lot for me to learn from that. You know, taking a good attitude, finding a way to turn your pain into your success. That's pretty incredible.
What does living an adjusted AS life mean to you? How has it changed your life? What adjustments have you had to make?
HO: Well, number one, living an adjusted life with AS is all about listening to your body and rolling with the punches and making the changes that are necessary to live a successful life. Ignoring those things is not going to make you successful with your AS. It will win.
But if you are humble about it and realize that the powerful condition, then you have a lot more success.
Helgi Olafson is a professional chef who was diagnosed with ankylosing spondylitis at age 19.
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