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 Amber Panagos & Dr. Muhammad Asim Khan
Friday, July 13, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with rheumatologist Dr. Muhammad Asim Khan and AS advocate Amber Panagos.
Dan: Welcome to This AS Life Live! which brings together people with AS to share our stories and inspire each other to live our best lives. Today I’m meeting with AS blogger, Amber and Dr. Muhammad Asim Khan, a rheumatologist who also lives with AS. They’ll share their unique points of view when it comes to making the most out of rheumatologist visits. Let’s go.
Dan: Well, Doctor Khan and Amber, thank you guys for taking time out of your busy schedule to meet with me, to talk a little bit about yourselves and AS. I want to start, I guess just by getting to know you guys. If you, Doctor Khan, would tell me a little bit about yourself, your upbringing, family; what life was like for you growing up?
Dr. Khan: Well, I became a refugee at three and a half years of age. Grew up in a nation that almost gave me free medical education, and graduated in '65, volunteered to serve in the nation's army to defend it from foreign attack. After two years of service in the army, I then had medical training in South Asia, in England, and then here in USA, since I was 25 years old. Handsome young man with plenty of hair on my head, so I've been a physician for 53 years.
Dan: Well, I'd say you're still pretty handsome.
Dr. Khan: But a patient for 62 years.
Dan: Wow. 62 years of living with AS?
Dr. Khan: Yes.
Dan: So, Amber tell me a little bit about your history, family, where you grew up?
Amber: I grew up in Oregon. Only child, great childhood. Now married, been married going on 15 years.
Amber: Have two lovely daughters, both school age. Basically I just do the mom thing, the awareness thing. I enjoy photography, I enjoy baking on days that I'm able to. And pretty much hanging out with my dog, she's what keeps me active, keeps me exercising.
Dan: So tell me a little bit about the first time in your life that you started to feel symptoms of AS.
Dr. Khan: First symptom; mostly groin pain. Pain in the upper part of the buttocks and also I will have some back pain and stiffness, especially at night time. But they were very gradual onset. It wasn't abrupt, and I had no idea what was the reason, those days there were no rheumatologists.
Dr. Khan: So, it was six years of delayed diagnosis as the medical student, professor of medicine took my medical history recognized the disease.
Amber: My diagnosis was actually complete coincidence. I happened to be in the right place at the right time.
Amber: After seeing numerous doctors, I finally found one doctor that was actually trying to listen and understand and trying to figure out what was wrong.
Amber: And then just one morning it happened to be fourth of July, woke up, excruciating internal pains, no idea what was wrong. My husband took me to the ER, cause holiday, doctors are closed.
Amber: The doctor who happened to be a fill-in doctor for the day because it was a holiday.
Amber: He goes "Do you have any back pain? Any type of hip problems?" "Yeah, that's basically all I am is a big back pain problem." And he goes, "Well you have textbook ankylosing spondylitis." "What?" I mean that was a blank stare, I had no idea what he was talking about.
Dan: So what is your AS life like now?
Dr. Khan: What I can tell you is life is pretty good for me.
Dr. Khan: Although, when you look at my functional abilities, my functional impairment is so bad people are surprised. How am I here in Las Vegas getting this interview done (laughs)? Because there are ways I can overcome the hurdles I face. I have difficulty putting my socks on and I can't go up the steps without holding onto the banister, one step at a time. I can't get up from the floor, if I drop the money, I can't pick it up. And so putting my trousers on, is all a big problem.
Dan: And yet you are smiling and you're happy and you're still serving people around the world and helping other people and here today. I mean, that, that’s incredible.
Dr. Khan: But I want the audience to know that these kind of things not happen as often. Because if we recognize the disease early, then the outcome is much, much better.
Dan: So Amber tell me a little bit about your AS life today. What it looks like?
Amber: One thing AS has definitely taught me is don't take anything for granted. I've definitely learned to slow down, appreciate the little things, appreciate life, live in the moment, enjoy the moment.
Dan: So what recommendation would you give to rheumatologist, then in going into their first meeting with a patient?
Dr. Khan: Give the patient ample time. And the last question every physician, no matter what specialty they are in, should ask the patient, looking in the eye "Is there anything else you want me to know?" Given that setting the patient will be so delighted that this doctor's willing to listen.
Dan: So Dr. Khan when would you say is the right time for someone to see rheumatologist?
Dr. Khan: So there should be no delay in referral by initial healthcare provider for a person who is young, male and female, teenager or young adult with chronic back pain and stiffness. That eases with exercise, gets worse with rest and such patients should ideally be referred by health care provider to a rheumatologist.
Dan: Amber what are two to three tips you would give to somebody who is going to a rheumatologist maybe for the first time, second time, that you have found helpful for yourself?
Amber: I would say writing things down such as questions that you have between appointments. Things arise that you aren't really gonna remember when it comes time for that appointment but it's still something you still wanted to address.
Amber: I did start to write stuff down, kept a pain journal. Would document where my pain was what type of pain, was it radiating? Was it thumping? Or pounding? Did it move around? How long was it there? That type of thing. And then my journal went into more stuff like the fatigue and "whoa, today was a good day. What happened that day that was different than the other day.
Dan: So Dr. Khan why would it be so important to see specifically a rheumatologist?
Dr. Khan: The rheumatologists can either verify the diagnosis somebody else has made or will be able to figure out what's going on and finally make the diagnosis. Also for proper follow-up and treatment, but the management should co-management. The rheumatologist taking care of the ankylosing spondylitis part and his or her primary care physician or internist will be able to continue care of the other medical needs of the patient.
Dan: Dr. Khan, Amber, thank you so much for taking the time out of your busy schedules to meet with me. I feel like I learned a lot today and I hope to see you again on the road and to continue the dialogue. May we continue to make this hidden disease be known by the world and thank you for your efforts.
Amber: Yes, thank you for having us.
Dr. Khan: Thank you.
Dan: Great to meet you.
Dr. Khan: Sure
Dan: I hope that his advice will make you feel fully prepared for your next rheumatologist appointment. I know I do. For more episodes and tips visit ThisASLife.com . Take care.
Other posts by Amber Panagos & Dr. Muhammad Asim Khan
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