In her powerlifting class in high school, while squatting 450 pounds, having anything wrong with her spine was the furthest from Ashley Romereim's thoughts. Afterall, she was hoisting the weight of three adults confidently over her head. Ashley, diagnosed with [ankylosing spondylitis (AS)](https://www.healthcentral.com/slideshow/10-facts-about-ankylosing-spondylitis) at age 16, was an athlete in the strength sport that includes the squat, the bench, and the deadlift categories. Now 30, she has found relief from some of the pain that comes with AS from a spinal stimulation device. Ashley talked with HealthCentral by telephone about what it was like to learn she has AS and how she lives a full life right now.

__HealthCentral (HC): How did you begin your AS journey?__

__Ashley:__ It began in 2004, when my first clue was pain in my back that didn't go away. I thought I'd pulled a muscle. But my dad and grandfather had AS, and so when I went to my primary care doctor, there was shadowing on the X-ray of my spine, and especially on the sacroiliac (SI) joint. This is common with AS, often as a first symptom. 

I was really active and this news was so frustrating. I had to quit softball — I was a catcher — and I couldn't lift anymore. I also had to quit marching band, where I played trumpet, which broke my heart. Music was my life and I was an opera singer who performed at Carnegie Hall with the Master Arts Chorale and at the Kennedy Center in Washington, D.C.



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Ashley Romereim lifting

__HC: You've talked about dealing with the pain and how exhausting that was. What did you do recently about that?__

__Ashley:__ On December 6 last year, I had a spinal stimulator surgically implanted. It's essentially an internal version of a TENS unit — which stands for transcutaneous electrical nerve stimulation. I have a battery pack implanted on the back of my left hip, right above my gluteal region. Two leads are attached on either side, and they go between my thoracic and lumbar vertebrae. The device transmits low-voltage electrical impulses, via electrodes, to the body part that's in pain.

This works really well for my lower back. The electrical stimulation relieves a lot of the pain, and I've been able to cut my dosage of oral pain medications in half. This is a big step for me, since I've been taking pain meds regularly since I was 18.

__HC: What else did you use in the past for your pain?__

__Ashley:__ I know they work really well for lots of people, but I don't react well to biologics. I did take Humira, a TNF blocker (tumor necrosis factor blocker), and I think I tried every TNF blocker, some for a few years, some for a short time. I also tried a biosimilar to the biologic drug Remicaid, called Inflectra, but I had a side effect of heart problems, with my heart skipping beats, along with tachycardia or really fast beats. I was tired of being in pain and tired of not working. I don't want to have to rely on my parents for help. Thanks to my device, now I have a receptionist's job at a doctor's office.



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Ashley Romereim

__HC: Tell us about your day-to-day health maintenance.__

__Ashley:__ I have to "recharge myself" daily, because the unit contains a battery. I use a portable charger. Oh, and I haven't had any issues with going through metal detectors! About those pain meds that I still take: I use the antidepressant Cymbalta, which in addition to helping my mood, is actually approved for the kind of pain I have. I also use muscle relaxers when I need to.

I confess I'm eating kind of terribly right now. But I try to do cardio and weights three-to-four times a week — I love the gym and also yoga. Oh, and I'm also hypermobile, which means my joints are much more flexible than normal and so I haven't had much fusion, which is both a blessing and a curse. For me, it means my knees pop out of my joints when I'm trying to take a class!



Ash 1

Ashley Romereim Supergirl

__HC: What else is relevant in your life right now and what "completes" you?__

__Ashley:__ I think it's so important not to view AS as "the end of the world.” Yes, it's disheartening to have this condition, but there's also a lot to learn, so do your research and find good doctors. Find a community of other people with AS. Being a part of that helps my depression immensely, for having people who understand what's going on has helped me more than anything — which brings me to therapy. It can be a godsend, especially when you are grieving the loss of life as you knew it. You learn to come into a new life, knowing you're never going to be the same person, but this is your new normal. There are still so many things you can do.


Ash 4

Ashley Romereim with owl

An implanted spinal stimulation device has reduced this woman’s low back pain and reduced her need for oral pain medication.

Ashley Romereim has been taking oral pain medication for her ankylosing spondylitis since she was a teenager. Now, a surgically implanted spinal stimulator has reduced her low back pain and cut her oral pain meds in half.

‘Internal TENS Unit’ Brings AS Pain Relief for This Former Powerlifter

Spinal Stimulation for Ankylosing Spondylitis Pain

GCJ5640-Edit

 From Star Athlete to AS Patient Advocate-GCJ5640-Edit

Learn how to navigate diagnosis, treatment, and daily life with ankylosing spondylitis, a rare and painful condition that afflicts men and women of all ages.  

Ankylosing Spondylitis: We've Got Your Back

 How one woman with ankylosing spondylitis found relief from a spinal stimulation implant

A Surprising Solution to Decades-Long Back Pain  

Zach Kornfeld announced he has [ankylosing spondylitis](https://www.healthcentral.com/slideshow/10-facts-about-ankylosing-spondylitis) (AS) [on YouTube in 2017](https://www.youtube.com/watch?v=v9iTfaYmH5E). Since then, he has continued to share his experiences with the disease as a member of The Try Guys, a YouTube comedy quartet Zach describes as “four guys who have tried everything from simulating labor pains to, trying drag, to swimming in the ocean with sharks.”

HealthCentral interviewed Zach by phone and discovered his approach to using ankylosing spondylitis as an opportunity to live a healthier and better life.

This interview has been edited for clarity.

__HealthCentral (HC): What is it like living with ankylosing spondylitis and being a Try Guy?__

__Zach Kornfeld (Zach):__ I’ve found that my job pushes me in a way that is positive. It’s encouraged me to be active, to be out there, and be open to new experiences. But at the end of the day there are just some things that I’m not gonna be able to do the way that I used to.

Honestly, the hardest part about my job isn’t the things I do on camera. I’m a total workaholic, and a lot of success of our show is built on a ton of late-night editing and that’s just not feasible anymore. My body lets me know now: “It’s time to stop working.” 

It’s funny, I mean, the disease is not good, and not fun, but it has forced me to revisit a lot of my work-life habits. I used to be wildly unathletic and unphysical, and AS demands that I change those things. It demands that I don’t work huddled over a computer for 16 hours a day. I’m the kind of person who doesn’t change anything until I absolutely have to, so life gave me a pretty loud wake up call, and I’ve tried my best over the past year-and-a-half to really listen and change the way I live.

Zach Kornfeld holding a copy of the book "The Hidden Power of Fucking Up."

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Zach Kornfeld book

__HC: Since your diagnosis, what else has changed?__

__Zach:__ After that video I had so many people reach out to me. There were people that got diagnosed with AS after hearing me talk about my symptoms. The biggest thing is that friends and family are now holding me a lot more accountable to my treatment. It was easy to go through the day without doing my stretches and not eating as well, but now that the videos are up, people are like: “Oh my god, you feel this way? You have to take *care* of yourself!” I get a lot more calls from my mom checking up on me and seeing how I’m doing, and from my grandma as well.

It’s hard for anyone who’s not experiencing it to really fully understand. I definitely have times where family members are frustrated that I’m not doing *more* to help myself, and I have to tell them: “Changing everything in your life all at once is really overwhelming, and everyone goes at their own pace. I’m handling it the best I can, making changes steadily, and improving my life steadily; but it is a process.”

__HC: How do you approach your self-care and treatment?__

__Zach:__ Before [my second video](https://www.youtube.com/watch?v=lbu8LLDB2dU), my medicine stopped working and it was a really slow process of acceptance. I just wanted medicine to solve all my problems.

The diagnosis was the first wake-up call. Once the medication stopped working, that was the second wakeup call. That really forced me to take a long look in the mirror and say:

“This is a lifestyle commitment. I can’t just rely on medicine. I need to be proactive about this. I need to test different things and monitor how different activities make my body feel. I need to commit to [stretching and exercise](https://www.healthcentral.com/slideshow/exercise-for-ankylosing-spondylitis) to get ahead of this thing and to *stay* ahead of this thing. And if I ever want to go into remission it’s not going to be just because the medicine was magically working, it’s gonna be a combination of so many things.”

I’ve noticed lately that [diet is a big one](https://www.healthcentral.com/article/diet-and-ankylosing-spondylitis), so I’ve just been conscious of triggers. Especially on big weeks, the cleaner I eat, the better I feel. I do a walk every morning with my dog. I try and do stretches every morning before I shower. I have a [portable TENS unit](https://www.healthcentral.com/article/the-truth-about-tens-devices-for-joint-pain). It’s just having these things; even if they don’t totally help 100 percent, they just make me feel better mentally knowing I have them.

39820368 1900866126665465 1415011039052824576 n (2)

Zach Kornfeld and Bowie

__HC: Why is it important to speak out about ankylosing spondylitis?__

__Zach:__ When I was a kid, I got diagnosed with [Obsessive Compulsive Disorder](https://www.healthcentral.com/encyclopedia/obsessive-compulsive-disorder) (OCD) and I had bouts of depression. In seventh grade, we were learning about OCD and there was this printout of famous filmmakers and artists throughout history who suffered from OCD and depression. Something that simple was enough to make me feel like I wasn’t alone.

Now I have this platform, and our content is about making the world a smaller place and highlighting people and making everyone feel less alone. I do that for other people’s passions and identities, and now I have an opportunity to do that for something I’m going through as well.

Talking about it has only led to positive things and changes in my life. Being open about my AS has introduced me to other people, it’s helped me deepen existing relationships, and it’s brought me new information about ways to care for myself in ways that I would have never expected. If you keep it to yourself, you’re just a one-person-army fighting this burden all on your own.

__HC: Is there anything else you want to share with HealthCentral?__

__Zach:__ For me the diagnosis was scary, but it was also a tremendous relief. Despite the fact that it’s not something I enjoy, it has forced me to become a better person and that’s made me ultimately a happier person. I’ve discovered pretty quickly that treatment is a bumpy road; but it’s a bumpy road that, with luck, keeps you trending in the right direction.

You can keep up with Zach on [Twitter](https://twitter.com/korndiddy) and [Instagram](https://www.instagram.com/korndiddy/).

__See more helpful articles:__

[11 Myths of Ankylosing Spondylitis Explained](https://www.healthcentral.com/slideshow/myths-of-ankylosing-spondylitis)

[Ankylosing Spondylitis: A Letter to My Younger Self](https://www.healthcentral.com/article/letter-to-myself-about-ankylosing-spondylitis)

[“Representation Matters:” This Scientist With Ankylosing Spondylitis Works on Mars](https://www.healthcentral.com/article/scientist-with-ankylosing-spondylitis)

Zach Kornfeld beach

Zach Kornfeld hero

A 2017 diagnosis of ankylosing spondylitis meant "Try Guy" Zach Kornfeld had to make choices for a healthier life with chronic illness.  

Along with Zach Kornfeld three YouTube partners, he'll try anything. Now he's trying a healthier life with ankylosing spondylitis.

"Try Guy" Zach Kornfeld Talks AS

"Try Guy" Tries Positive Approach With Ankylosing Spondylitis

"Try Guy" Zach Kornfeld Shares His Positive Approach to Living With AS

If you have ankylosing spondylitis (AS), care may be managed by your interdisciplinary team but your own care is up to you — and it’s just as vital. Try these tips for AS self care.

Ankylosing spondylitis is chronic inflammatory arthritis of the spine — but it can also affect your mind. An AS specialist explains why recognizing and managing depression should be part of your treatment plan. 

As if AS pain isn’t enough to deal with, it can also affect your mental health. Learn why managing depression should be a natural part of your treatment. 

Ankylosing Spondylitis Can Lead To Depression

Ankylosing Spondylitis and Your Mental Health

Woman sitting, thinking, and holding a fallen leaf.

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Woman thinking and holding a fall leaf

Just as important as your medical team and medication regimen is your practice of self-care. Sometimes this means choosing the right workouts, and sometimes it’s about prioritizing your priorities. At the end of the day, remember that you matter more than your condition.

While You’re Treating Your AS, Treat Yourself, Too

Self-care for Ankylosing Spondylitis 

Counteract forward flexion

Manage flare-ups

Choose non-weight-bearing exercises

Assess your fitness

Mind your mindfulness

Determine what self-care means to you

Think before you do

Prioritize your priorities

It's about you

Self-Care for Ankylosing Spondylitis: You Matter

This month marks 10 years since [ankylosing spondylitis (AS)](https://www.healthcentral.com/category/ankylosing-spondylitis) dramatically changed the trajectory of my life. If I could look my younger self in the eyes, place my hand on her shoulder, and speak words that would bring comfort, this is what I would say.

Dear KJ,

You are so afraid, and I want you to know you have permission to fear and flail and break. The pain in your body bewilders you, and you fear you’ll never receive validation for how profoundly and rapidly your life has changed. 

You will.

I want you to know you never gave up. 

At times you feel the uncertainty of not having a diagnosis or a secure [path to treatment](https://www.healthcentral.com/slideshow/treatment-options-ankylosing-spondylitis) might make your soul crumble. It won’t. 


“So, look up and live, even though your body sometimes feels like death.” -KJ Ramsey, ankylosing spondylitis blogger

You will survive the uncertainty. Learning to accept the unknowable nature of your illness will enlarge your soul instead of diminish it. Embracing the tension of living with pain while longing for wholeness will make space for you to know what many can’t see — that joy can coexist with pain. What you learn in the dark will create more beauty than you can imagine. Your pain will make you radiant. 

But you don’t have to figure out the purpose of your pain for your life to be meaningful. Trying to parse out why you got sick and what the point of it is could keep you from seeing the good right in front of you. So, look up and live, even though your body sometimes feels like death. See the good right in front of you, even if it’s only the beam of sunshine filling the room you haven’t left all week. Feel its warmth, and let it fill you. Sickness will slow your life, but in slowing you will see the beauty others blaze past.

Courage is not simply something we possess but something we can cultivate. And
the courage you cultivate will be beautiful. Your assertiveness and determination to live well will get you the help you need to find a path forward. You feel stuck, but you aren’t.

Some doctors won’t hear you, and I wish I could spare you from this pain. Their arrogance will make you feel hopeless but know this: You will not lose hope. You *will* be heard. Doctors will eventually listen and see what burns beneath your skin. So keep speaking up about how terrible you feel. Keep insisting a 20-year-old should not feel like you do. You will not be undiagnosed forever. 

You feel like you are the only young person suffering and sick. Let your loneliness move you toward others, even though it may come at great cost. Not everyone will receive you well, but many will. Learn to not be offended by the well-intentioned-but-hurtful things people say in response to your illness. Instead of being resentful, consider honoring your need to be known, seen, and supported as worth the work of helping others know how to relate to you. On the other side of awkward conversations will be the sweetest friendships of your life. 

Pain makes the distance between your life and those of your peers feel far. But it’s not. As you share your pain with safe people in your life, they will learn to let their pain be seen, too. You’ll realize everyone hurts and your sorrow won’t be what keeps you from others, it will connect you to them. 

Your life will be good. I can’t tell you how good or how hard, for that is yours to discover. But know there is good to come. You’ll be wildly surprised by the things you can and will do.

Your tenacity, assertiveness, and willingness to see your own pain in all its fierce darkness will make room for more goodness than you can imagine in both your life and the lives of so many others. I see you in all your fear and overwhelm, with dreams dangling and hope languishing, and you rise again and again. In both your weakness and your strength, you, my younger self, are beautiful. Thank you for never giving up.

With gratitude and respect,

Your older self

__See more helpful articles:__

[Understanding Ankylosing Spondylitis and the Latest Treatments](https://www.healthcentral.com/slideshow/treatment-options-ankylosing-spondylitis)

[A Letter to My Younger Self: 8 Lessons I’ve Learned About Ulcerative Colitis](https://www.healthcentral.com/article/letter-to-younger-self-ulcerative-colitis)

[Finding Home With Chronic Pain at Burning Man](https://www.healthcentral.com/article/finding-home-with-chronic-pain-at-burning-man)


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Woman writing in journal

Blogger K.J. Ramsey was diagnosed with ankylosing spondylitis in her 20s — she was afraid and in pain, and had no idea what the next decade would bring. This is what she would say if she could go back and talk to that 20 year old.

K.J. Ramsey was diagnosed with AS in her 20s — she was afraid and in pain, with no idea what the next decade would bring. If only she could go back and talk to that 20 year old...

After a Decade of Disease: This is What I Would Tell My Younger Self

Ankylosing Spondylitis: A Letter to My Younger Self

Dr. Tanya N. Harrison, Ph.D., calls herself a professional Martian, and it is clear she is once you know what she does for a living.

Tanya spends her days exploring Mars as a science team collaborator on the [Mars Exploration Rover (MER) “Opportunity](https://mars.nasa.gov/mer/home/).” In addition to her work as a planetary scientist and the director of research for Arizona State University’s space technology and science (“NewSpace”) initiative, she regularly tweets about living with [ankylosing spondylitis](https://www.healthcentral.com/encyclopedia/ankylosing-spondylitis) (AS).

HealthCentral caught up with Tanya by email to learn more about what goes on behind those tweets. This interview, edited for clarity, offers a glimpse into Tanya’s journey as a woman living with AS in the field of science, technology, engineering, and mathematics (STEM).

Tanya driving the Canadian Space Agency’s (CSA) Mars Exploration Science Rover (MESR) at the CSA “Mars Yard” near Montreal.

Picture1Tanya driving the Canadian Space Agency’s (CSA) 

__HealthCentral (HC): You call yourself a professional Martian, how did you get there and what do you do in your role?__ 

__Tanya:__ I’ve loved space for as long as I can remember and Mars, in particular, after watching the “Sojourner” rover drive around on the surface of the red planet from images captured by the “Pathfinder” lander in 1997. Shortly after that, in 1999, I got involved with NASA’s Mars Millennium Project for students to design a human base on Mars. 

After getting undergraduate and graduate degrees, I ended up getting a job working in mission operations for NASA’s Mars Reconnaissance Orbiter at a small space camera company called Malin Space Science Systems in San Diego.

Now I work at Arizona State University continuing my Martian geology work and working in ops for the Panchromatic Cameras (Pancam) aboard NASA’s “Opportunity” rover. Being on teams for the rovers is such an incredible experience. Even though I’ve been doing this for years now, it still blows my mind every single day that we’re driving a robot around on another planet tens of millions of miles away!

__HC: What do you love about your career? What has surprised you?__

__Tanya:__ You never know what you’re going to see each day, and that keeps things exciting. Maybe today’s the day the rover is going to spy the rock that unlocks our understanding of Mars! You never know. The biggest surprise … that’s a tough question. On a positive note, it’s how active Mars is. Stuff is happening there all the time, much more than I realized before it was my job to look at it every day: Weather, avalanches, dust devils, boulder falls, and more. 

__HC: What led to your diagnosis? Was it expected?__

__Tanya:__ When I was in grade school, I was a pretty active kid. I was an Irish dancer, played softball and (briefly) basketball, loved indoor hockey, you name it. But in grade five/six, I started to have a lot of joint pain and trouble running. By grade seven, I was having trouble walking because of the pain and stiffness and was taken out of gym class entirely. My parents took me around from doctor to doctor trying to diagnose the problem. It wasn’t until we went to the Children’s Hospital in Seattle that I got an initial diagnosis of “[undifferentiated spondyloarthropathy](https://www.healthcentral.com/article/what-is-spondyloarthritis),” which was more specifically refined to AS a couple of years later. It definitely wasn’t expected since AS typically hits middle-aged men!  

_HealthCentral note: AS is part of a disease category called spondyloarthritis, formerly known as spondyloarthropathy. [Spondylitis is typically diagnosed between ages 17-45](https://www.spondylitis.org/Overview). While a greater number of men are diagnosed, with [some sources estimating a ratio of 2-3:1](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3059876/), the number of women being diagnosed is growing._

__HC: How does AS affect your work and vice versa? How do you balance each?__

__Tanya:__ Most practically, AS makes it extremely painful to sit at a desk all day. It has also involved a lot of doctor’s visits and hours spent in infusion clinics. Luckily when you work (virtually) on Mars, you can pretty much do it from anywhere if you’ve got an internet connection. That means that I can still do my work even if I’m at the Mayo Clinic, or at home in bed when it’s too painful to get up that day.

I try to take advantage of the periods when I am feeling decent to be hyper-productive. But over the years I’ve also learned to listen to my body and try to be more OK with accepting that there are days when I won’t get much done. You have to learn to be OK with that and let yourself heal when your body says, “Hey, I need you to slow down for me today, OK?"

_Note: read more about [daily life with AS here](https://www.healthcentral.com/article/maximizing-everyday-life-with-ankylosing-spondylitis)._

__HC: You tweeted a [picture of yourself in a medical gown this summer](https://twitter.com/tanyaofmars/status/1007805226999373824) with a powerful message for those reading it. Can you say more about what you wrote and why?__ 

__Tanya:__ There was a point in my undergrad days when my health was so bad, I ended up having to withdraw from all of my classes. I had ended up with a severe infection while on immunosuppressants for AS that my body wasn’t fighting and ended up in the hospital for three weeks. It felt like such a blow, like I would never be healthy enough to finish school, let alone fulfill my dream of being a Martian scientist. My biggest inspiration at the time was Stephen Hawking — despite suffering from [Amyotrophic Lateral Sclerosis](https://www.healthcentral.com/encyclopedia/lou-gehrigs-disease) (ALS), he was one of the greatest scientific minds of a generation. I would think of him anytime I felt like giving up. If he could give lectures to sold-out crowds around the world, I could get myself to my physics class.

__HC: How did the responses to your tweet affect you?__

__Tanya:__ I didn’t expect the tweet would get as much attention as it did. The responses were incredible and brought me to tears. Women in STEM don’t have many people to look up to, and those of us with disabilities have even fewer. I’m so happy that doing something as simple as posting photos of myself looking less than glamorous while in the hospital and sharing my story can help other people with disabilities of any kind feel like they can follow their dreams of becoming scientists/engineers/whatever they want. I’m not saying the path is easy, because it most certainly isn’t. But if it’s something you are passionate about, you can try to find ways to make it work for you. 

__HC: What’s your go-to hack for managing your AS symptoms and treatments while you’re traveling?__ 

__Tanya:__ Right now my main treatment is Remicade, which I get as an intravenous (IV) infusion every seven weeks, so I have to plan my infusions and travel around each other since it’s critical to not miss an infusion. My only other “hack” is, since I’m usually travelling for conferences, to stay at a hotel near the conference venue so that I can pop back to my room and lay down if I need to recharge. Conferences, in particular, can be rough with the combination of sitting and/or standing for extended periods of time.

__HC: What else would you like to say about your journey with AS?__

__Tanya:__ It hasn’t been easy. Some days are better than others. Some days are awful and I just want to lie in bed and cry and feel sorry for myself. And sometimes that’s what you need to do, and that’s OK. But my love for Mars and space really keeps me going—because getting to play with robots on another planet is too cool to let something like AS stop me!  

__HC: Why is it important for women and nonbinary, transgender, and femme-identifying people with chronic diseases and disabilities to be represented in STEM?__

__Tanya:__ This ties into my answer for the tweet question above: Representation matters. Doing some retroactive psychoanalysis here, I think "young me" didn’t think much about the fact that there weren’t many women in science for me to look up to because having a disability seemed to affect my daily life much more than being a woman. But it definitely stuck out to me that Stephen Hawking was the *only* prominent scientist that I knew of with a disability. It made him seem like an outlier rather than the norm. And I don’t want that to be the case for people—I want everyone to believe they can pursue careers in STEM regardless of disability, gender identity, sexual orientation, etc. You can be you, AND you can be a scientist!

Keep up with Tanya [on Twitter](https://twitter.com/tanyaofmars) and [on Instagram](https://www.instagram.com/tanyaofmars/), and rest assured, she does speak Martian, since, as she says, “all of the ‘Martians’ right now are robots we’ve sent there.”

__See more helpful articles:__

[Myths of Ankylosing Spondylitis](https://www.healthcentral.com/slideshow/myths-of-ankylosing-spondylitis)

[Dare to Dream With Ankylosing Spondylitis](https://www.healthcentral.com/article/dare-to-dream-with-ankylosing-spondylitis)

[Just Plane Flying With Ankylosing Spondylitis: Know Before You Go](https://www.healthcentral.com/slideshow/preparing-to-fly-with-ankylosing-spondylitis)

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Dr. Tanya N. Harrison, Ph.D. lives with ankylosing spondylitis — she also calls herself a professional Martian because she spends her days exploring Mars as a science team collaborator. Find out how she manages the pain of AS, while also managing a rover on Mars.

Find out how this scientist roams Mars while also living with ankylosing spondylitis in our compelling interview with Dr. Tanya N. Harrison, Ph.D.

A Martian With Ankylosing Spondylitis

This Scientist With Ankylosing Spondylitis Works on Mars

An interview with real life professional Martian, Dr. Tanya N. Harrison, Ph.D., about how she manages AS while also managing a rover on Mars

"Representation Matters:" This Scientist With Ankylosing Spondylitis Works On Mars

If you have ankylosing spondylitis, plane travel can be especially challenging. Here's what you should know about TSA medication rules, how to navigate the airport in a wheelchair, and how to stay healthy and prevent joint stiffness during your flight.

iS-Just Plane Flying With Ankylosing Spondylitis: On Travel Day-iStock-532875014-promo

For a smooth journey — from security to baggage claim — here’s what you should know about plane travel with ankylosing spondylitis.

Tips For Flying With Ankylosing Spondylitis

Flying With Ankylosing Spondylitis: 10 Travel Tips

Manage your medications

Lighten your load

A note on wheelchairs

Pre-board the plane

Prevent in-flight stiffness

Keep busy while you sit

Consider wearing a face mask

Have ground transportation ready

Jumpstart travel recovery

Practice self-care

Just Plane Flying With Ankylosing Spondylitis: On Travel Day

[Ankylosing spondylitis is a type of arthritis](https://www.spondylitis.org/Ankylosing-Spondylitis). It is a chronic inflammatory disease that affects the lower part of the spine, resulting in pain, stiffness, and decreased mobility of the spine. Surrounding joints, such as the sacroiliac joint (the lower part of the spine where it joins to the hips) and neck may also be affected. This painful condition can cause bone erosion, increased bone formation in the spine, and can lead to deformity of the spine in advanced stages. While there is no cure for ankylosing spondylitis, what you eat can dramatically affect the way you feel and minimize some of the side effects of this condition.

### The best foods to eat

An [anti-inflammatory diet](https://www.healthcentral.com/slideshow/10) rich in heart-healthy fats and fresh fruits and vegetables is the best type of diet to help manage the symptoms of ankylosing spondylitis. HealthCentral breaks down specific foods and why they are important to include in your daily diet:

**Omega-3s:** There is significant evidence that [a diet rich in omega-3 fatty acids can improve symptoms caused by inflammation](https://www.ncbi.nlm.nih.gov/pubmed/12480795). Fatty fish, such as Alaskan salmon, herring, mackerel, anchovies, and sardines are the best fish sources of omega-3s. Flaxseeds, walnuts, chia seeds, and oils such as canola, soybean, and walnut are also good sources of this healthy fat. Look for foods that have been fortified with omega-3 fatty acids, such as eggs, soymilk, yogurt, and juices.

fresh fruit and vegetables, salmon, beans, and nuts.

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**Fresh fruits and vegetables:** Brightly colored vegetables, such as spinach, kale, broccoli, carrots, grapes, bell peppers, oranges, and tomatoes are rich in antioxidants that have numerous health benefits, including disease prevention and [reduced inflammation from chronic disease](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2676354/). Think about “eating a rainbow” of colors from these food groups each day.

**Foods rich in calcium and vitamin D:** Calcium and vitamin D help to build strong bones, which is essential since people living with ankylosing spondylitis are at high risk for osteoporosis. The best sources of calcium are low-fat dairy products, including milk, cheese, and yogurt. Vegetables such as kale and broccoli are also good sources, and fish with soft, edible bones (like sardines and canned salmon) also contain calcium. Many products such as bread, cereal, pasta, and juices are now [fortified with calcium.](https://www.healthcentral.com/article/the-best-fortified-foods-for-calcium-and-vitamin-d) Milk substitutes, including almond and soymilk, contain even more calcium than a glass of milk. To get more vitamin D in your diet, consume dairy products that are fortified with vitamin D. Fatty fish, egg yolk, butter, margarine, and fortified cereals are also good sources of vitamin D.

### Foods to avoid

**Processed foods and refined carbohydrates:** Eating fewer processed foods and eliminating refined grains from your diet can [help to reduce chronic inflammation](https://www.arthritis.org/living-with-arthritis/arthritis-diet/anti-inflammatory/anti-inflammatory-diet.php). Cutting back on simple carbohydrates found in white bread and refined grains and cereals can help you to identify if these foods may be contributing to inflammatory symptoms. Choose complex carbohydrates (like whole grain cereals) that are higher in fiber and protein over simple carbohydrates made from refined white flour (such as white bread, chips, crackers, and snack foods).

iS-Ankylosing Spondylitis: How Diet Can Affect Your Condition-iStock-931331818


**Sugar:** [A high-sugar diet has been linked to chronic inflammation](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868080/), in addition to other health problems, such as cardiovascular disease and diabetes. Sugar is hidden in many packaged and processed foods and is often hard to identify. Common names for sugar added to foods include fructose, maltose, sucrose, lactose, and dextrose. Sugar is also found in ingredients such as cane juice, fruit juice concentrate, corn syrup solids, malt syrup, and honey, so be sure to read labels to identify hidden sources of sugar.

**Red and processed meat:** Avoid consuming red meat (beef, lamb, and pork) and processed meats (bacon, hot dogs, salami, sausage, and ham), since [intake of these meats has been linked to increased inflammation in the body](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5540319/).

**High-fat foods:** The Arthritis Foundation recommends avoiding high-fat foods, [especially foods high in trans-fat and saturated fat](https://www.arthritis.org/living-with-arthritis/arthritis-diet/foods-to-avoid-limit/food-ingredients-and-inflammation-3.php), since they can contribute to inflammation. Avoid red meat, full-fat dairy products, and packaged snacks and sweets to limit your intake.

**High-sodium foods:** [A high-sodium diet has been linked to chronic inflammation and autoimmune disease](https://www.nature.com/articles/nature11868), so it’s wise to avoid excess salt in your diet. Limit packaged, processed, and canned foods as well as condiments and sauces with added salt. 

### The bottom line

While there is no cure for ankylosing spondylitis, diet may impact how you feel while managing your condition.
Maintaining a healthy weight is critical, since excess weight can lead to increased stress on your joints. Being overweight is also a risk factor for osteoporosis. If you need guidance on managing your symptoms through diet or
need help with weight loss, seek the advice of a registered dietitian.

__See more helpful articles:__

[10 Facts About Ankylosing Spondylitis](https://www.healthcentral.com/slideshow/10-facts-about-ankylosing-spondylitis)

[11 Possible Complications of Ankylosing Spondylitis](https://www.healthcentral.com/slideshow/possible-complications-of-ankylosing-spondylitis)

[10 Foods That Fight Inflammation](https://www.healthcentral.com/slideshow/10)

Cooking healthy food to help ankylosing spondylitis.

iS-Ankylosing Spondylitis: How Diet Can Affect Your Condition-iStock-874413004

Ankylosing spondylitis is a type of arthritis that affects the lower part of the spine and causes pain and stiffness. While there is no cure for ankylosing spondylitis, what you eat can dramatically affect the way you feel and minimize some of the side effects.

Diet can't cure AS, but there are foods you can eat to help minimize your joint pain and swelling — and some that can make it worse. Choose wisely.

How Diet Can Help Ankylosing Spondylitis

Ankylosing Spondylitis: How Diet Can Affect Your Condition

The first lines of treatment for ankylosing spondylitis are physical therapy and exercise, but if you need something more, your treatment options may include surgery, biologic medications, and interleukin-17 inhibitors.

Smiling physical therapist working with female patient's hip.

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Smiling physical therapist

The first lines of treatment for ankylosing spondylitis are physical therapy and exercise, but if you need something more, consider these options.

Best Ankylosing Spondylitis Treatment Options

Ankylosing Spondylitis: Understanding the Latest Treatments

Numbers aren't increasing

Not completely understood 

How to treat ankylosing spondylitis

Get moving to help yourself

The basics work for many

How to manage fusion

The logic of biologics

Use biologics carefully

Interleukin-17 inhibitors

More trust in the gut

The role of surgery

Understanding Ankylosing Spondylitis and the Latest Treatments

__Q. I’ve been diagnosed with ankylosing spondylitis. Which treatments are recommended?__

__A.__ The American College of Rheumatology has released [updated treatment guidelines](http://www.rheumatology.org/Portals/0/Files/Recommendations%20for%20the%20Treatment%20of%20Ankylosing%20Spondylitis.pdf) for [ankylosing spondylitis](https://www.healthcentral.com/category/ankylosing-spondylitis) and nonradiographic axial spondyloarthritis. The guidelines cover the recommended drug and nondrug treatments, strategies for monitoring patients, managing related conditions, and considerations for surgical approaches. 

The guidelines provide helpful guidance for treating active ankylosing spondylitis, stable ankylosing spondylitis, ankylosing spondylitis together with additional conditions such as advanced hip arthritis, severe kyphosis, acute iritis, [inflammatory bowel disease](https://www.healthcentral.com/article/ibd-and-older-adults), and non-radiographic axial spondyloarthritis. 

For example, for patients with active ankylosing spondylitis, recommendations include the use of nonsteroidal anti-inflammatory drugs, tumor necrosis factor inhibitors when nonsteroidal anti-inflammatory drugs (NSAIDs) don’t work, physical therapy, and [hip arthroplasty](https://www.healthcentral.com/article/what-to-know-about-joint-replacement) for patients with advanced hip arthritis. Tumor necrosis factor inhibitors monoclonal antibodies were recommended for patients who also have inflammatory bowel disease or recurrent iritis. 

In this joint project by the American College of Rheumatology, the Spondylitis Association of America, and the Spondyloarthritis Research and Treatment Network, doctors and researchers developed the recommendations after reviewing studies that addressed 57 specific treatment questions and evaluating the quality of clinical evidence. 

The treatment recommendations are voluntary and will provide a useful framework as you work with your rheumatologist to determine your best treatment plan.

__See more helpful articles:__ 

[Top Back Pain Causes](https://www.healthcentral.com/article/top-back-pain-causes)



Woman working with physical therapist using a walker.

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Woman working with physical therapist

If you live with ankylosing spondylitis or related conditions, updated treatment guidelines from the American College of Rheumatology can help you find the best treatment options, including NSAIDs and tumor necrosis factor inhibitors.

New guidelines can help you find the best treatment options for ankylosing spondylitis and related conditions.

Best Treatments for Ankylosing Spondylitis

John A. Flynn, M.D., M.B.A.

Best Ankylosing Spondylitis Treatments

"What do you do?" the person asked.

"I'm disabled," I replied.

"No. What do you *do*?" they repeated.

This stranger with streaks of dust down their legs and a crusty bandana around their neck really meant: “Who are you?”

Who I was in that moment was extreme pain and debilitating fatigue, but I also felt more alive than I had in years. This person did not mind that I am disabled. To them it did not matter if I was the queen of England or if I was wearing a unicorn horn; they wanted to know what made me me.

At Burning Man, one simple question: “What do you do?” gave an opening for me to learn how to love myself again.

[Burning Man](https://burningman.org/) is an arts and alternative-lifestyle event in Black Rock Desert in Nevada. About 70,000 people build a temporary city — Black Rock City — every year the week before Labor Day. They show up to play, explore, party, gift, create, and survive in a desert with dust storms, extreme temperatures, and limited access to resources.

“With the weight of my disease off my shoulders, I am able to remember parts of me that are hidden beneath layers of grief over losing the body I once had.” -Charis Hill

As someone living with ankylosing spondylitis (AS), much of my life revolves around things I have no control over, like being incurable. My disease consumes my body with pain, fatigue, and stiffness in almost every joint; which seem like obvious reasons not to attend an event that requires radical self-reliance in an austere environment. Yet, Burning Man has become Home.

With spotty or nonexistent cell reception, Burning Man means no doctor, pharmacy, or insurance phone calls for eight days. It is a complete unplug from my default life and an opportunity to focus on myself.

When I was diagnosed with AS in 2013, I was teetering on the edge of collapse; the disease had already taken away so much of my former identity. No longer could I run marathons, play soccer, or work full time successfully. I was a shadow of my former self. I was so broken.

I had nearly given up on finding myself inside a sick, stiff, inflamed body. Burning Man changed that. I became whole again in the middle of a dusty desert with thousands of temporary neighbors. Life-changing moments can happen in unexpected places.

In Black Rock City, radical self-expression is expected. People can be whatever they need to be without fear. If I wanted, I could pretend that I am a fish and people would say: “Tell me what it’s like to be a fish, Fish.” It is in this context that, year after year, people hold up metaphorical mirrors for me to look at myself without judgment.

With the weight of my disease off my shoulders, I am able to remember parts of me that are hidden beneath layers of grief over losing the body I once had. I am still grieving, but also realizing I can merge parts from before with the new passions I have found, like writing and speaking.

Burning Man is where I choose to participate as much or as little as I want. It is where I choose what I do, who I talk to, where I go, and when I rest. I do not have to prove anything to anyone. This is a stark contrast to my default life where I am a professional sick person checking boxes on paperwork, passing lab tests, meeting with doctors, and filling prescriptions.

I realize not everyone can leave home for a week to find a Home like I have found at Burning Man. I rely on significant help to go and I recognize the privilege that comes with being able to go at all.

But I do not always leave my bedroom to find Home.

After my first “burn,” I realized I could access Home outside Black Rock City. I brought some Burning Man back with me to the default world.

I learned some things about what Home feels like and I want to share them. Maybe it will help others find Home in their own lives.

__Home is:__

- A feeling of fullness, as if my chest is expanding from within and may explode with contentment

- Showing up and knowing, without a doubt, “I want to be here”

- Feeling seen for my pain, struggle, passions, and who I choose to be

- Freedom to have an adventure I am in charge of, whether it is outside my bedroom or in my mind

- Laughing until I cry, crying until I laugh

- Feeling safe, being vulnerable, being happy without guilt

- Where I am, without a doubt, unabashedly me

- Where I have permission to love myself fully and completely, exactly how I am

I find these “places” outside Burning Man all the time now. Home is something inside myself; it is a feeling, a hope, a dream, an experience, a place. Home is all these things and more; all it takes is being present enough to recognize when Home is happening and to grasp it in the moment.

At Burning Man I found a place where it was safe to break down. I found a place where people love me in my brokenness and I my grief. I found a place to find myself and be myself. I found a place to call Home. I hope others can too.

__See more helpful articles:__

[Using Creativity to Cope With Chronic Illness](https://www.healthcentral.com/article/using-creativity-to-cope-with-chronic-illness)

[11 Myths of Ankylosing Spondylitis](https://www.healthcentral.com/slideshow/myths-of-ankylosing-spondylitis)

Woman holding up heart-shaped hands in the desert.

Heart-hands-iStock-614023832

Read this story from ankylosing spondylitis advocate Charis Hill about how a trip to Burning Man helped her see past her chronic illness to find parts of herself that had been hidden under layers of grief.

Do you have that place you can go that makes you feel like you? The place where your chronic illness doesn't matter. For Charis, that place is Burning Man. 

At Burning Man She Could Be Herself Again

Look Past Ankylosing Spondylitis to Find Yourself Again

Finding Home With Chronic Pain at Burning Man

More than any other type of arthritis, ankylosing spondylitis calls for a treatment plan that combines medication and [appropriate exercise](https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Living-Well-with-Rheumatic-Disease/Exercise-and-Arthritis). Ankylosing spondylitis causes inflammation in the spine, resulting in scar tissue and calcification. Without proper care, the spine can stiffen, compromising mobility and increasing risk for spinal fractures. 

Stiffness tends to worsen with inactivity and improve with regular low-impact physical activity, and while medication can reduce inflammation, exercise increases joint flexibility, improves posture, and reduces stiffness. 

Exercise has the added benefits of supporting cardiovascular health and keeping blood pressure and cholesterol within normal range. It also increases bone density and reduces stress, so why not get moving?

The [Spondylitis Association of America (SAA) recommends four types of exercise](https://www.spondylitis.org/Spondylitis-Plus/evidence-based-spondylitis-guidelines-1): range of motion, stretching, strengthening, and endurance (cardiovascular). All four types should be done regularly. Thanks to a pamphlet produced by SAA, you can easily plan and maintain a sensible exercise program.

While not what many would call “exercise,” posture control is important for people with ankylosing spondylitis. Better yet, it’s easy. Stand straight, with spine and neck aligned, and do this consciously many times a day. Breathing deeply is also beneficial not only for respiration but also for the way it expands the rib cage.

A posture-related exercise involves lying on the floor face down on a mat, head turned to one side. Hold that position for a minute or so, and then turn your head in the opposite direction and hold it for the same amount of time. The ultimate goal is 20 minutes.  

Swimming is also an ideal exercise for those with ankylosing spondylitis, according to [Brian R. Kaye, M.D.](https://www.sutterhealth.org/find-doctor/dr-brian-r-kaye), chief of the division of rheumatology, at Sutter East Bay Medical Foundation, Berkeley, and clinical professor of medicine at the University of California, San Francisco. 

“Swimming is generally acknowledged to be an excellent exercise for patients with ankylosing spondylitis because of the excellent back flexion and extension that occurs without putting strain on the spine,” he advised. 

For people who don’t swim, benefits can be achieved by gently stretching in a warm pool. Recreation centers may have group aquatic therapy sessions for people with arthritis. Call local athletic facilities to see if they have an aquatic program for people with joint problems, or follow the guidelines provided by the [Arthritis Foundation](http://www.arthritis.org/living-with-arthritis/exercise/arthritis-friendly/aquatics.php).

People who prefer land-based exercise should [ask their doctor before undertaking a low-impact exercise](https://www.ncbi.nlm.nih.gov/pubmed/26493464) like gentle yoga, which involves stretching, bicycling, or walking. Dr. Kaye advises anyone with ankylosing spondylitis to avoid high-impact activities like contact sports and jumping on a trampoline, which could cause harmful spinal compression.

Maintaining an ideal body weight will reduce stress on the spine, so diet also plays a role in better health, according to Dr. Kaye.

“There are no nutritional factors that have been scientifically demonstrated in a double-blind fashion to improve or worsen the outcome in ankylosing spondylitis,” he advised. “Nevertheless, one should eat a healthy, well-balanced diet for general health.”

“Because we have much to learn about the effects of nutrition on ankylosing spondylitis, I would encourage patients to ‘listen to their body’ and avoid foods they feel make themselves worse on a consistent basis,” he said.  

Listening to your body and giving it the exercise and nutrition it needs can go a long way to improve your quality of life, whether you’re living with chronic illness or not. If you have ankylosing spondylitis and are thinking of adding some of these exercises into your daily routine, it’s a good idea to consult your doctor first.



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Ankylosing spondylitis patients can improve flexibility and posture with low-impact exercises like swimming and walking, while high-impact activities like contact sports should be avoided.

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If you live with ankylosing spondylitis, these are the best — and worst — exercises to help you improve flexibility and posture.

How To Maintain Mobility With AS

Ankylosing Spondylitis Exercises: The Best and Worst Options

Best and Worst Exercises for People With Ankylosing Spondylitis

There are not many occasions for which I willingly rearrange furniture, wipe cat hair off the kitchen table, sweep the floor, and labor over the stove before an anticipated knock on my door. 

It simply hurts too much.

The pain and fatigue from [ankylosing spondylitis](https://www.healthcentral.com/article/ankylosing-spondylitis-patient-advocate) are too great for me to cook and clean on a regular basis, but hosting a potluck every few months is worth it for the friends I get to see.

After college, several years [before my diagnosis](https://www.healthcentral.com/article/diagnosing-ankylosing-spondylitis), I began hosting potlucks. I loved gathering friends in my home and sharing a meal together. These meals were an easy way to socialize without spending a lot of money or making all the food.

[After I was diagnosed](https://www.healthcentral.com/article/diagnosing-ankylosing-spondylitis), I gradually lost many social opportunities I had taken for granted when I was an athlete and worked full-time. It was a few years before I realized my potlucks had become my social life. Now I host potlucks several times a year and special meals on Thanksgiving and Christmas Day for friends who do not have plans elsewhere. 

While these occasions are draining, I prefer them over the stress and exhaustion of scheduling dinner out with a different friend every week. Hosting in my own home means I set the date, control the environment, choose the guests, and decide when people should arrive and leave. I have also discovered that if I am not able to provide a dish for my own potluck every time it is OK; there is always more than enough to go around. I often find myself eating leftovers for a week!

For me it takes a couple months to conserve enough energy to host each potluck, but it is worth it every time. I can usually summon the energy to put on a party hat when my guests arrive because I know that as soon as they leave, my cats will come out of hiding and I can hibernate with them for at least a week to recover. Fortunately, I have been hosting potlucks for long enough that my guests also understand and accept that my energy levels will fluctuate.

[Living with ankylosing spondylitis](http://www.healthcentral.com/slideshow/10-facts-about-ankylosing-spondylitis?ic=more) has severely impacted my social life, but I feel fortunate to have found a way to maintain friendships that is the least taxing for me. Since potlucks have become an integral part of my life I would like to offer some tips for others who may be interested in hosting their own:

1.	Choose a theme for each potluck, like “winter flavors” or “breakfast for dinner.” People love being challenged to think of new dishes. Encourage homemade food.
2.	Invite people you know well to your first potluck and celebrate whoever shows up, whether it is two people or 10 people.
3.	Schedule the potluck on one of your better days and block out enough time before and after to prepare and to recover.
4.	Create potluck guidelines ahead of time with the date, time, dietary needs or allergies, noise preferences, whether people should come if they are sick, whether alcohol is welcome, where to park, whether children are welcome, and whether you’re willing to talk about your disease all evening.
5.	When people arrive, hand them an index card to list every ingredient in their dish so guests with various dietary needs can eat without fear. Yes, every ingredient!
6.	Ask a friend to arrive early to help you set up, another friend to stay late to help clean up, and another friend to come over the next day to help put away clean dishes.
7.	Add a fun touch. Have guests vote for their favorite dish or have an anonymous gift exchange.
8.	Set up a self-serve station for everything or eat family-style around a table so that once people arrive you can sit and relax.

Finally, I want to share my go-to recipe for potlucks:

### Charis’ Roasted Root Vegetables



ThinkstockPhotos-827231432.jpg

__Ingredients__

- 1 large red or white onion, peeled, cut into ½-inch thick wedges
- 2 medium gold or red potatoes, cut into bite-sized chunks (peel if desired)
- 1 large sweet potato, cut into bite-sized chunks (peel if desired)
- 4 large carrots, cut into ¾-inch thick rounds (peel if desired) 
- Optional: 2 links sausage, cut into ¾ inch thick rounds (I use vegan Field Roast Smoked Apple Sage sausage)
- 3 cloves garlic, diced
- 3 tablespoon each balsamic vinegar, olive oil
- 1 tablespoon apple cider vinegar
- 1 teaspoon each dill seed, parsley, oregano, rosemary, turmeric, ginger powder, cumin
- Salt and pepper to taste

*__Pro-tip: If radishes or Brussels sprouts are in season, toss a few of them into this recipe for a treat!__*

__Directions:__

1.	Preheat oven to 425 degrees.
2.	Cut onion, potatoes, carrots, and sausage into bite-sized chunks. Dice garlic. Place into a large bowl and mix with the balsamic vinegar, olive oil, apple cider vinegar, herbs and spices.
3.	Pour the contents into a large roasting pan and spread in a single layer. Use an additional roasting pan if necessary.
1.	Roast for 40 minutes, removing halfway through to toss the vegetables and sausage. 

__See more helpful articles:__

[A Beginners Guide to RA: Friends & Family](https://www.healthcentral.com/article/a-beginners-guide-to-ra-friends-family)

[Managing a Chronic Condition? Simple Recipes for Holiday Entertaining](https://www.healthcentral.com/article/holiday-recipes-for-chronic-conditions)

[Learning to Live With My New Wheelchair](https://www.healthcentral.com/article/ankylosing-spondylitis-new-wheelchair)

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Charis Hill, a health advocate who lives with ankylosing spondylitis, maintains a rich social life by hosting potlucks. Here she shares her favorite recipe, and offers helpful tips for hosting your own potlucks.

iStock-615398488

Maintaining a social life with ankylosing spondylitis isn’t easy — but potlucks can be a great way to spark new friendships and rekindle old ones. 

How Potlucks Became My Social Life With AS

Ankylosing Spondylitis: Potlucks Help Me Have a Social Life 

How Potlucks Became My Social Life With Ankylosing Spondylitis

Forty percent of people with ankylosing spondylitis also experience eye inflammation. These are the signs and symptoms of uveitis, and how this eye condition is diagnosed and treated.

iS-How Ankylosing Spondylitis Affects Your Eye Health-iStock-970236924

Many people with ankylosing spondylitis also develop an eye condition called uveitis. Here's what you need to know.

Ankylosing Spondylitis and Eye Health

How Ankylosing Spondylitis Affects Your Eye Health

How to tell if you have uveitis

Take the first step in managing uveitis

How is uveitis diagnosed?

Anti-inflammatory medications to treat uveitis

Biologic medications to treat uveitis

Surgical procedures that treat uveitis: Part 1

Surgical procedures that treat uveitis: Part 2

What happens if uveitis is left untreated?

Lifestyle changes can protect your eyes 

Advances in uveitis research

What’s everyday life like for people with [ankylosing spondylitis (AS)](https://www.niams.nih.gov/health-topics/ankylosing-spondylitis)? The short answer: It’s different for everyone. 

[Anywhere from 0.1 to 1.4 percent of the general population has AS](http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/ankylosing-spondylitis/), a degenerative form of autoimmune arthritis that primarily affects the spine and joints, commonly causing back pain and stiffness. 

Ricky White, a registered nurse turned writer and stay-at-home dad, [shares smart strategies for patients with AS](https://www.healthcentral.com/article/managing-healthcare-appointments-an-interview-with-ricky-white) in his January 2017 book [Taking Charge: Making Your Healthcare Appointments Work for You](http://endlesstrax.com/takingcharge/). On his blog, [Endless Trax](http://endlesstrax.com/), he offers a more personal perspective on AS, describing his own emotional highs and lows. Here he talks to HealthCentral about his coping style, his kids, his medication regimen, and his commitment to living his best life.  

__HealthCentral (HC): How has AS most significantly impacted your everyday life?__

__Ricky White:__ My day-to-day life is completely different in every aspect. I don’t see that as a bad thing, though. In fact, I often count it as a blessing. I’ve learned to become grateful for the smaller things that I used to take for granted — getting in and out of the car, for instance, or tying my shoes. You can’t stress about the things you can’t do anymore. Instead, you have to focus on the things you can do and make the most of the opportunities lying ahead of you. 

__HC: How has the disease affected the way you care for your kids?__

__Ricky White:__ Nothing gets in the way of me and my kids. Not even my disease. Sure, some days are hard. But as long as I’m honest with myself, and don’t push myself past my limitations, everything can be achieved. I’ve certainly developed good time-management skills as a result. On the bad days, I just have to decide which tasks are vital and which can wait. It’s not difficult; you just have to do some planning. Rarely is doing the laundry a life-or-death situation. But feeding the kids is, or they may revolt.

__HC: You’re a martial artist. What can anybody with AS who wants to stay active learn from your experience?__

__Ricky White:__ I actually got back into martial arts because of my AS. I trained in Shotokan karate as a child, but stopped around age 12. It wasn’t until I moved from the UK to the US, in 2014, that I decided to restart training again, this time in Shaolin Kempo. 

I had become overweight, and I was struggling more on a day-to-day basis. I knew my poor diet and lack of exercise were just making things worse. I was also very aware that, now that I was a stay-at-home dad, my children were looking up to me more than ever. I was determined to lead by example, which meant changing my own habits and doing what I could to control my disease. In the end, I lost 35 pounds and have become stronger and more flexible than ever. And on the 20th of May 2017, I was promoted to the rank of first-degree black belt. 

My AS certainly presented some challenges, but it was a huge learning experience for me. I realized there were things I could do that I didn’t think possible. The opposite was also true. Getting to know my own body on that intimate level was incredibly eye-opening. I can predict, fairly accurately, how my body will react on a certain day, or after a certain task. This is immensely helpful when I’m scheduling my work and play. 

Staying active is imperative for anyone with AS. But the lesson I learned early on in my martial arts training was the necessity of recovery time. It needs to be planned into your week. Treating your recovery time with the same level of importance as the exercise itself is key. Ignore the recovery and you’ll soon burn out or get injured, which just makes it more likely you will give up doing the thing that may be helping you the most.

__HC: As a writer, you spend a lot of time sitting in front of a computer. Is that hard on your body?__

__Ricky White:__ Sitting for prolonged periods of time is difficult for most patients with AS. The inactivity leads to increased stiffness and pain. So 20 to 30 minutes is really the limit. After that I have to get up and walk, and sometimes stretch. I’m not always as disciplined with this as I’d like, so I’ve started standing more to work. 

The only issue is I don’t have a surface high enough for my laptop, so I tend to look down at my screen. This is obviously bad for my neck. So I’m putting serious thought into investing in a good standing desk. Hopefully this will help my workflow. Stopping every half hour to walk can be an unwelcome interruption, making it harder to get any kind of momentum going. 

__HC: What is your pain management like and how does it shape your life on an everyday basis?__

__Ricky White:__ My pain management varies greatly depending on the type and severity of the pain. As I mentioned, my martial-arts work has helped me become attuned to my body. So, I know if my pain is active inflammation that I can treat with ice and stretching. If it’s more muscle pain and spasms, then I use hot therapies and exercise. And throughout I use non-steroidal anti-inflammatory drugs. 

In the more extreme bouts of pain I use “big boy” pain killers, but I prefer to save them for when they are absolutely necessary. There is no one piece of advice I can offer to help others, as AS and chronic pain are very individualized. All I can say is learn what works through trial and error, and create a routine around that. 

__HC: Your book is about communicating more effectively with your health care team. Do you have any advice about how to communicate with the people in your everyday life — your boss, your spouse, your friends — to get the support you need? __

__Ricky White:__ It’s unrealistic to expect anyone who doesn’t have AS to “get it.” The best we can do is educate them with specifics — how long we can sit, the drugs we take, and their side effects — and be honest with them. That last part can be a struggle, too. 

Sometimes people with AS worry that if they reveal too much, they might lose their job, or their partner will leave them. In my experience, the opposite is true; honesty often helps form stronger bonds with others. It builds trust, regardless of the type of relationship. But it’s impossible to be honest with others if you aren’t honest with yourself first. As a stubborn guy, I can tell you firsthand that lying to yourself will only make things harder in the long run. 

__See more helpful articles:__

[Managing Health Care Appointments: An Interview with Ricky White](https://www.healthcentral.com/article/managing-healthcare-appointments-an-interview-with-ricky-white)

[Ankylosing Spondylitis (AS): Medications Can Maximize Quality of Life](http://www.healthcentral.com/slideshow/ankylosing-spondylitis-medications-can-maximize-quality-life)

[Ankylosing Spondylitis Causes and Risk Factors](https://www.healthcentral.com/article/ankylosing-spondylitis-causes-and-risk-factors)

[Diagnosing Ankylosing Spondylitis](https://www.healthcentral.com/article/diagnosing-ankylosing-spondylitis)

Ricky White

Ricky White, a registered nurse turned writer and stay-at-home dad, shares his smart strategies for patients living with ankylosing spondylitis in this Q&A.

 Ricky White

Ricky White, RN turned writer and stay-at-home dad, talks about life with ankylosing spondylitis, finding gratitude, and making sure to feed the kids.

Everyday Life With Ankylosing Spondylitis

 Diane M. Horowitz, MD

Medical Reviewer

Maximizing Everyday Life With Ankylosing Spondylitis

There are several types of arthritis that tend to occur more often in certain families. Environmental factors also influence the onset of arthritis, however, thus the precise impact of heredity is hard to quantify.

When a disorder “runs in a family,” that means that more than one person has had the condition. The likely cause can be any of three possibilities:

1.  A gene mutation is being passed to other family members

2.  A behavior pattern is being learned, for example, overeating and not exercising, or

3.  A combination of both

When genetics professionals assess family history, they ask about first-, second-, and third-degree relatives. First-degree relatives would be parents or children and sisters or brothers. Second-degree family members would be grandparents and grandchildren, aunts and uncles, nieces and nephews. A third-degree relative would be a first cousin. Let’s consider what is known about heredity and various types of arthritis by referring to the [Genetics Home Reference](https://ghr.nlm.nih.gov/condition/ankylosing-spondylitis#inheritance) in the US National Library of Medicine, National Institutes of Health.

__1. Ankylosing spondylitis (AS)__ can occur in more than one person in a family, but is not purely genetic. Rather, it blends genetic and environmental factors. How do they know? There is an association between having the HLA-B27 biomarker, and yet 80% of those who inherit the biomarker will not get AS.

__2. Rheumatoid arthritis (RA)__ also is believed to be a combination of genetic and environmental factors. While there is an association with the human lymphocyte antigen (HLA) genes, particularly HLA-DRB1, environmental exposures such as smoking and viral and bacterial infections also increase risk for RA. Having a family member with RA increases risk but is not the sole factor in predicting susceptibility.

__3. Psoriatic arthritis (PA)__ is more likely to be acquired in the presence of variation of specific HLA genes. About 40 percent of people with PA have at least one close relative with psoriasis alone or PA, but a combination of genetic and environmental is believed to influence whether one acquires PA.

This indicates the wisdom of controlling one’s environmental risk factors to the best of his or her ability if any type of arthritis is prevalent among family members. If there’s a genetic risk, it can’t be changed. But many environmental risks can be controlled. For example, maintaining a healthy weight, following a nutrient-dense diet, and engaging in regular low-impact physical activity might prevent the onset of arthritis even if a genetic factor is present.

Many chronic diseases are correlated with obesity, resulting from an unhealthy diet and inactivity. The rewards of resisting temptation are good health and quality of life. People who have arthritis need to know that it’s never too late to make changes. Regular physical activity and weight loss can put less stress on joints and improve quality of life.

Family picture with cell phone camera at picnic.

iStock-491753236

Family photo at picnic

Find out how genetics and heredity can affect your risk for different forms of arthritis, such as ankylosing spondylitis, rheumatoid arthritis, and psoriatic arthritis, and how physical activity and weight loss might provide preventative benefits.

Find out which types of arthritis are most likely to be passed down through your family, and how lifestyle changes may help you prevent them.

Arthritis: What Role Does Heredity Play?

Hereditary Arthritis Risk: When Arthritis Runs in the Family

What is the Role of Heredity in Risk for Arthritis? 

Most people who live with ankylosing spondylitis (AS) do not require surgery. That’s because the array of medications, when combined with exercise and physical therapy, control the condition well enough to prevent severe joint degeneration and deformity. Sometimes, however, spine and hip damage is so severe that mobility and quality of life are seriously compromised. In those instances, a board-certified orthopaedic surgeon who is trained and highly experienced in correcting spinal fusion or replacing a severely compromised hip should be consulted. Hip replacement is more frequently undertaken in people with AS than corrective spinal surgery. Both procedures require a course of rehabilitative physical therapy to ensure optimal function following the procedure.

### Hip replacement

People with AS frequently experience severe degenerative damage to the tissue and bone in the hip. Few recent studies focus on outcomes of hip replacement in people with AS. [Goodman and colleagues](https://www.ncbi.nlm.nih.gov/pubmed/25275762), however, compared results in hip replacements for people with OA and people with AS two years postoperatively. Although the AS patients had worse comorbidities at the time of surgery than the patients with OA, two years after the procedure there was no difference in level of pain or function.

### Spine surgery to restore posture 

Ankylosing spondylitis (AS) can cause the vertebrae to fuse, resulting in a frozen bent-over position. A permanently fused spinal column prevents a person from standing straight or being able to look ahead. Instead, the person is forced to look downward.

Surgery can help, but the procedure carries risk. Anyone considering surgery should choose a board-certified orthopaedic surgeon who specializes in correcting this type of deformity and who has performed the operation many times. The procedure has an 80 percent success rate according to [Dr. Jeffrey T. Nugent](http://www.arthritis.org/living-with-arthritis/tools-resources/expert-q-a/ankylosing-spondylitis-questions/ankylosing-spondylitis-spine.php), an orthopaedic surgeon. To straighten the neck curvature, bone must be removed from the base of the neck, and then the remaining vertebra fused.

Talk to physicians, family, and friends before proceeding with surgery. If possible, talk to others who have already had the surgery being considered. Ask what the procedure and recovery were like and whether the outcome has significantly improved quality of life. Get multiple perspectives and weigh the risks and benefits before deciding to proceed.

iStock-477080678

Ankylosing spondylitis sometimes requires surgery, usually a hip replacement, to help ease the pain of your condition. Here how you can decide if surgery is necessary based on your level of joint degeneration and deformity.

Ankylosing spondylitis sometimes requires surgery to help ease the pain of the condition. Here's how to decide if surgery is necessary.

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