A Voice for Ankylosing Spondylitis
Reviewed by Poonam Sachdev on February 18, 2022
Video Transcript
SPEAKER 1: This disease impacts
me differently every day.
[MUSIC PLAYING]
There are days that I am walking on a runway in heels. There are days I've spoken at press conferences with my congresswoman. I use a wheelchair sometimes, other times I use my cane. And then there are other times that I am in bed all day and writhing in pain.
[SOBBING]
It hurts so bad.
[MUSIC PLAYING]
My whole identity was wrapped around sports. I played basketball, I played volleyball, I played softball, and soccer became my love. When I was 13, my knees would ache at night to the point that I would cry myself asleep. I just kind of blamed growing pains on all of it, until college. I would have lower back pain, but doctors told me it's because I was an athlete. Being active was what kept the pain at bay. Exercising is the only time I actually feel in control of my body.
My first year in college, I tore my ACL. I had surgery, and I was not recovering. My back pain became a real issue, and I went to doctors. But again, they said, well, it's because you're an athlete. I felt extremely alone. I can feel everything. I just can't move. Not having answers became sort of a pattern. That led to me deciding I was going to find answers on my own, and that's when I reached out to my dad.
My dad had ankylosing spondylitis as well. Seeing how his body would keep curving forward was terrifying. But when I was growing up, it was a man's disease. I wasn't going to get it. When I was diagnosed, I actually had nonradiographic axial spondyloarthritis. That really just means I have AS, but there's no evidence of damage to my spine yet. And when I learned that's what I had, I knew that was my future, that I was going to become just like him. And I'm still fighting that. I know there are treatments now that will not let me be that way. I will not be my dad.
As bad as it hurts right now, nothing can hurt as bad as AS. So within two or three months, I was on a biologic. I've noticed a reduction in pain, and that's huge. I still have a ton of pain. I still have to take pain meds every now and then. But to have a treatment that is consistent, it increases my quality of life. I make use of my cane and my wheelchair because it allows me to do more with my energy, and it reduces my pain. I'm nearing seven years with this disease, and I'm finally getting to the point where I know I'm not going to be like my dad. I'm not going to have a curved spine, and there are treatments out there. A couple weeks after I was diagnosed, I saw an ad for fundraising for the Arthritis Walk. I started posting on Facebook about what I was going through. I ended up raising $10,000. I realized that there was real power in just telling my story. From there, the Arthritis Foundation sent me to DC. They trained me in how to lobby Congress for health care matters, and I was suddenly catapulted into this advocacy world.
[MUSIC PLAYING]
Within a year and a half of being diagnosed, I had been featured in an Associated Press article, I had started a support group. You name it, I've been in magazines. I do a lot of modeling. So in 2018, I was invited to New York Fashion Week. I didn't think, how exciting I'm walking in New York Fashion Week. I'm thinking, this is going to raise so much awareness for AS. And I realized this was part of my calling.
I get messages from people who have not feel seen or heard for living with AS, and they come across my blog and they say, I don't feel alone anymore. Thank you. And it's those kinds of messages that tell me I can't stop because I can see the difference it's making in people's lives. My life goal is to make AS a household name. We're getting there.
SPEAKER 2: I think you ran an extra mile.
SPEAKER 1: Yeah, I think so.
[MUSIC PLAYING]
There are days that I am walking on a runway in heels. There are days I've spoken at press conferences with my congresswoman. I use a wheelchair sometimes, other times I use my cane. And then there are other times that I am in bed all day and writhing in pain.
[SOBBING]
It hurts so bad.
[MUSIC PLAYING]
My whole identity was wrapped around sports. I played basketball, I played volleyball, I played softball, and soccer became my love. When I was 13, my knees would ache at night to the point that I would cry myself asleep. I just kind of blamed growing pains on all of it, until college. I would have lower back pain, but doctors told me it's because I was an athlete. Being active was what kept the pain at bay. Exercising is the only time I actually feel in control of my body.
My first year in college, I tore my ACL. I had surgery, and I was not recovering. My back pain became a real issue, and I went to doctors. But again, they said, well, it's because you're an athlete. I felt extremely alone. I can feel everything. I just can't move. Not having answers became sort of a pattern. That led to me deciding I was going to find answers on my own, and that's when I reached out to my dad.
My dad had ankylosing spondylitis as well. Seeing how his body would keep curving forward was terrifying. But when I was growing up, it was a man's disease. I wasn't going to get it. When I was diagnosed, I actually had nonradiographic axial spondyloarthritis. That really just means I have AS, but there's no evidence of damage to my spine yet. And when I learned that's what I had, I knew that was my future, that I was going to become just like him. And I'm still fighting that. I know there are treatments now that will not let me be that way. I will not be my dad.
As bad as it hurts right now, nothing can hurt as bad as AS. So within two or three months, I was on a biologic. I've noticed a reduction in pain, and that's huge. I still have a ton of pain. I still have to take pain meds every now and then. But to have a treatment that is consistent, it increases my quality of life. I make use of my cane and my wheelchair because it allows me to do more with my energy, and it reduces my pain. I'm nearing seven years with this disease, and I'm finally getting to the point where I know I'm not going to be like my dad. I'm not going to have a curved spine, and there are treatments out there. A couple weeks after I was diagnosed, I saw an ad for fundraising for the Arthritis Walk. I started posting on Facebook about what I was going through. I ended up raising $10,000. I realized that there was real power in just telling my story. From there, the Arthritis Foundation sent me to DC. They trained me in how to lobby Congress for health care matters, and I was suddenly catapulted into this advocacy world.
[MUSIC PLAYING]
Within a year and a half of being diagnosed, I had been featured in an Associated Press article, I had started a support group. You name it, I've been in magazines. I do a lot of modeling. So in 2018, I was invited to New York Fashion Week. I didn't think, how exciting I'm walking in New York Fashion Week. I'm thinking, this is going to raise so much awareness for AS. And I realized this was part of my calling.
I get messages from people who have not feel seen or heard for living with AS, and they come across my blog and they say, I don't feel alone anymore. Thank you. And it's those kinds of messages that tell me I can't stop because I can see the difference it's making in people's lives. My life goal is to make AS a household name. We're getting there.
SPEAKER 2: I think you ran an extra mile.
SPEAKER 1: Yeah, I think so.
