Diagnosed with a Chronic Autoimmune Disease | My Ankylosing Spondylitis Story

I’m a former competitive dancer (now medical school professor) and third generation AS sufferer. It’s a tough world for people with this condition. Sending love.

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Thank you for sharing your story. I began mine back in 2009. So many doctors passed it off as nothing serious, "getting older" or Fibromyalgia. I'm just now finding out, at 46, that it actually is AS. I have 3 pairs of vertebrae and joints that have fused. I'm so glad you were diagnosed at a young age before your joints have permanent damage. I wish you the best! 😊

I, too, am an AS warrior. 💪🏽 I’ve had AS for 29-30 yrs. I wasn’t diagnosed until about 6 yrs ago. I started out having pain in my SI joints at about 19-20yrs old. It was very painful at times finding it hard to walk. I was always active and a bit athletic until my pain worsened and spread to my lower back, after I started having my children at 21 yrs old. I don’t take any anti-inflammatory meds because I don’t want any side effects. The pain for me has always felt like I maxed out on a workout and stayed sore with the body aches and stiffness. I’ve been able to manage most of my pain through what I eat or don’t eat and of course with daily stretching and activity. A few yrs ago, I couldn’t get out bed without literally rolling off my bed onto the floor and crawling to the bathroom to pull myself up. At that time I became a pescatarian and was eating clean and was able to maintain a good workout which really made a difference. But since, because of my work schedule and always being busy with my children, I don’t eat like I used to or work out at all. So my pain has started growing. Recently, the pain has spread to my neck and shoulders, knees, ankles, wrists, and elbows. Sometimes my fingers and toes. As a result I can no longer maintain a run and my equilibrium is off. I’m also starting to develop the dowager’s hump. 😩 which I hate the most. Although, I’m sure I could reverse it if I just get back in the gym and work on my core. Which brings me to why I don’t or haven’t yet. I’m always so tired now. Extreme fatigue has kicked in over the past year. 🙄 I have a very hard time getting up every day because I feel so lazy and just want to sleep. So working out is not on my to do list at this time. 👆🏼Thank God I’ve been blessed to maintain my flexibility! 🙏 Some pointers: Eat clean or healthier Drink lots of water Exercise/stay active Stretch 2-3X a day or more Don’t sleep with a pillow and sleep flat on your back Take your vitamins/naturally as well Unfortunately, no more heels ladies. I wore heels up until 5yrs ago. Now I mostly wear sneakers. 😏 Do your damndest to maintain a good posture or it will go fast. God bless us all.. 🙏❤️

Thank you for sharing your story, I am dating a wonderful woman who was diagnosed with AS a few years ago and before meeting her I didn’t even know what this disease was, but hearing your story help me so much to understand the gravity of the situation. I hope we can find the HUMERA medication accessible to her. Thank you for sharing 😊😊😊

I was diagnosed with AS about 25 years ago. My mom had it so I got diagnosed in my early 20’ where it took her 25+ years for a diagnoses. I’ve had 4 back surgeries and on biologics that aren’t helping at all. The pain is daily and never goes away. It’s worked up my spine into my neck now too. Even finger and toe joints affected now. I’ve never had it go in remission and many times in my life I’ve had flares where I can’t walk at all or barely stand without severe back and leg pain. I was a big athlete and go days without being able to walk or sit without pain is hard. Just diagnosed with psoriatic arthritis now too. Sorry you are having to deal with this disease too. It’s horrible!!!

Previous dancer here! Currently waiting for my results. The stories on here and google are terrifying. Glad there’s hope. Thanks for sharing your story.

Im at the point where i have met my rheumatology doctor and did some blood samples, waiting for the results and like you i had never heard about ankylosing spondylitis until my doctor mentioned, still in a bad place but im 100% sure that this is whats wrong with me, i have been stuck to this phone screen making my own research about spondylitis and everything makes sense now all the pain, all the times i have been to the doctor office complaining about pain, been to so many doctors and nobody could figure this out except my last doctor, im greatful that this certain doctor took the time to really listen to me and care, i wish you all the best and i find comfort in that you found a medicine that works for you, hoping i will get to that point aswell, have a nice day 😊

Thank you so much for sharing!

Thank you for sharing this. really Jillian! It's been a journey for you and I am glad you stood you're ground on finding what was going on! be as strong as u can be! I am HLA B 27 positive, I have all the symptoms of AS and its been hard to diagnose it because you know " it doesn't look like it could be this serious " the doctors say. Even had one that said he doesnt think i need a diagnose! I feel alone in this, and this type of videos warm me up and shade my sadness a little. not having the answer is daunting. lots of love for you :3

Thank you for sharing. I have been struggling to get a diagnosis for 5 years. The pain and discomfort have taken a toll on me. AS is difficult to pin point. I was told AS is what I have.

I was a professional dancer and got diagnosed with ankylosing spondylitis too! Glad to have found someone in the same position

I've been dealing with symptoms for 2 years, couldn't get any doctors to listen to me. I was finally diagnosed with RA and Sjogren's last week, but it took forever because I have seronegative RA, which means it doesn't show up in my bloodwork.... but I had to laugh when you said you got 11 vials of blood taken. My rheumatologist was on a mission and took 22 vials from me! I took a picture because it was the most I've ever had taken at once. I didn't pass out or anything, but I was definitely lightheaded when I stood up! Lol! I'm glad you got your diagnosis. ❤

Thank you so much for sharing! I also just got diagnosed recently with AS after having the SI joint pain for 10 years, it only got worse from there lol....ugh! I wish you the best!! 🥰

I'm so beyond thankfull that I found your video and reading these comments I now know that I'm not alone. These past three years was like hell to me and a few months ago I found that I have AS. It didn't hurt me as much before as it is now, but I'm hopefull now that I can make a change, so thank you and all these women, and I really hope that we can all be pain free someday❤.

I’m so glad you did this video ❤ it’s so hard to find life stories with AS. I was diagnosed in November this past year after almost 8 years of trying to figure it out. I had given up hope of anyone figuring out what was going on. I found a random urgent care doctor one day and he told me that he wouldn’t stop until he figured it out. Sent me to the Rheumatologist and two visits later I had a diagnosis ❤

Thank you so much for sharing information. I'm a physiotherapists just diagnosed with as before 3 months. All the best warrior. Stay strong.

Hi from Australia 😊 I'm a 57yr old woman, just been diagnosed with AS, a MRI shows i have "active disease" in my sacroiliac joints. I had already started Humira about a month ago for RA. I am positive for the hla-b27 gene. Thankfully here Humira is only $30 a month (2 injectables). I'm also on plaquinil, Sulfasalizine and meloxicam. Im lucky to have a great rheumotologist. All the best to you.

This video comes at a perfect time! Thank you for making it, you never hear anything about this illness from a woman. I already have an autoimmune disease and have been experiencing new awful backpain that brought me to tears many times for 6 months now. It comes and goes but is always my sciatic joints. I have an appointment with a chiropractor next week and I hope they can help.. even if something is just out of place the pain is excruciating and I would like it to stop. Your video was very informative :)

Thanks for sharing your story, its always nice to have people to relate to😊 you're very pretty btw!