A.S. Face 2250: Cara Y.

 A.S. Face 2250: Cara Y.

I was sent to a chiropractor with back pain at the age of 12 after a car accident. My x-rays showed degenerative disk and spine disease. I was told the degenerative changes were from growing too fast. I was a very active teen and never really sat still. When I had to sit still it was very difficult and uncomfortable. I have always had pain in my back and never had good flexibility so sports were not for me. I loved roller coasters, roller skating, and swimming. I stayed active throughout college. I married and had a child at 22 and this is where my pain started to get interesting.

All three of my pregnancies were very difficult and I was in such pain like never before. They had difficulties giving me epidurals. One birth they gave up on the epidural altogether and another I had 14 injections before it took. Carrying my pregnancies to holding my babies was absolutely miserable. Cleaning dirty milk bottles, doing dishes, and holding a toddler was the worst time in my 20s. I could not bend over to bathe my children so I knew at 29 that this was my last pregnancy.

Fast forward through motherhood to now and I have progressed into advanced AS. I am 44. I currently use a cane and have lost an inch and a half in height. I was officially diagnosed about five years ago. I diagnosed myself. I had to fight for a rheumatologist to recognize my disease. “The best Rheumatologist in Dallas” diagnosed me with a different condition. I am HLAB27-. I had to fight for the correct diagnosis from them. It was not until I had radiographic evidence in my SI joints that it was written down and officially diagnosed. This was despite my MRI and CT-positive bamboo calcified spine and inability to bend over. I have seen a few docs since then, to say the least.

I work part-time when I can with my petconomy business. I have a supportive family.

Pain is too often overlooked and dismissed. Pain is destructive to us not just painful. We must be our own advocates and have someone to advocate with us. Shop around, get many answers, and ask lots of questions. The more you know, the more you know.

A.S. Face 2248: Val Ruiz

 A.S. Face 2248: Val Ruiz

I was diagnosed with AS in 1984, when I was 24.

Minnesota, United States of America

A.S. Face 2247: Lori Erickson

 A.S. Face 2247: Lori Erickson

My name Lori Erickson and I have had AS symptoms since 2008. I am from Pennsylvania but spent 21 years in the Air Force and retired in 2019. Somehow I managed to pass all the physical requirements the military has in order to have a successful career. My last run was when my labrum tore in my hip and it’s when I finally listened to my body. After a knee and hip surgery recovery I decided to kiss AS in the ass and I got my first yoga instructor certification. I volunteer now days and I am always working on my goals of keeping flexible and staying strong. Love the AS community and how much positivity their is for those of us that have struggled throughout the years. 

“The strongest actions for a woman is to love herself, be herself and shine amongst those who never believed she could.” — Unknown

Pennsylvania, United States of America

A.S. Face 2246: Sharon Rackley

A.S. Face 2246: Susan Rackley

My name is Susan Rackley and I have axial spondyloarthritis. I was diagnosed with this in 2020 right as COVID hit. I have been suffering with this disease since my 20's and I am now 44. I saw a rheumatologist back then who said I had spondyloarthritis and had very little information to give me and the internet didn't exist so I ignored it for 20+ years and went on about my business until I hit 40 and my flares and inflammatory issues were wrecking my body and I needed to figure out how to get things under control. I decided to go back to the rheumatologist and figure out. I was immediately put on biologics (Cosentyx) which was working well but only lasted for two weeks and I was prescribed once a month. The doctor tried to get my insurance to approve me to have it twice a month but it was denied. She has switched me to Taltz and I am on month three and I see no change and I am in horrible pain. Hopefully it decides to work or we switch again.

Besides AS, I am currently dealing with NASH, stage 4 cirrhosis and I found out I have a rare genotype (IZ) and am Alpha-1 Antitrypsin deficient. So these are both contributing to my liver failure.

Charlotte, North Carolina, United States of America

A.S. Face 2243: Natalie G.

 A.S. Face 2243: Natalie G

Hello! My name is Natalie and I have non-radiographic axial spondyloarthritis. I was finally diagnosed in 2018 at 40 years old, about a decade after I first started having more notable symptoms & issues. As a child I had several skin issues (on feet and scalp) and as a teenager I was a cheerleader and tumbler and always had a hyperextended back and elbows. I thought I had a “bad back” starting in my late twenties and early thirties due to my cheer & tumbling days.

At 39 I gave birth to my miracle baby (after a miscarriage at 38) and had my largest flare up I had ever experienced postpartum. I was so stiff in the mornings that I could not walk to the bathroom without holding onto walls and could not use a crib for my baby as I would not be able to lift him in and out of the crib. After the low back pain and stiffness came the eye inflammation (episcleritis) and connective tissue inflammation on my breast bone and lungs. Then the neuropathy on my arms and legs.

I would have continued to suffer without knowing anything about AS, but then a friend told me about a disease her son had called Ankylosising Spondylitis and she asked me if I had heard about it as I had several of the same issues as him. I went to my GP and we found u was HLA-B27 positive. (We already knew I was ANA positive.) She referred me to a rheumatologist who completely dismissed me since I did not show issues on x-ray. Another friend referred me to her amazing rheumatologist. This rheumatologist listened to everything and did a full exam. She was the physician who diagnosed me with non-radiographic axial spondyloarthritis. I am so very grateful that she understood the complexities of the disease and very much validated all I have experienced.

We continue to be on a journey to find the best treatment plan for me. I am the solo mama of two young boys and am determined to remain active & fight for my best possible health for them! My youngest son has already had some skin issues on his body and scalp and that concerns me for the genetic component of this disease. I pray for better detection, treatments and ultimate healing from this disease for all. ♥️

A.S. Face 2242: Christina W.

 A.S. Face 2242: Christina W.

I also have AS 37 now dx 33. I don’t have much to say that I don’t say often or I haven’t said before. Never give up, always stay vigilant and keep fighting! I’ve been on this rollercoaster 🎢 for awhile now and it’s better when you find balance, new limits and keep trying to move even when it’s hard. Pt physical therapy as well as stretching 🙆‍♀️ can help. Massage helps. I’ve tried everything from acupuncture, vitamins, took the whole pharmacy and what I learned was figure what helps you and what works for you and keep doing it. Try not to over do things and watch your stress. Breath work and mindfulness as well as meditation can help. Your whole garden needs tending too not just one part of you but all of you. From mental health to your self love/self care to your heart to your muscles to your bones and so on. This is a long journey but you ain’t alone on this path it’s dark I know but there’s someone fighting the similar battles and what works for one may not work for you. Never stop trying to learn. Know tomorrow is a new day and a new beginning. We can’t cure AS but we can fight it! Fight on men & women! Most women aren’t afforded a diagnosis you know. Women do and can get AS too! It’s not just a man’s dx! I know more women with it than men myself. My mom likely had it too. She lived in electric wheelchair 40-50s when she passed away from cancer after fighting never ending battles herself from lupus sle to losing her memories then her mind until cancer took her. I have more than one auto immune too. Often we have more fights than we do energy but we must keep fighting. I fight for my husband my rock and my person who makes me feel whole. My special needs teens who I love dearly and would do anything to keep being able to stay here to see them grow up. I had to change everything from the top to the bottom. From how I looked at things to how I lived life and find new ways to make it better. From diet to my mental health. I had to work on too many things but I did and it helped. When I was dx I was 33 dr have me try 2 biologics failed allergic then remicade infusion and methotrexate as I also have RA. This is what’s helped me most as well as stretching and moving. I’ve had to use a wheelchair and a cane but now I don’t. I have to say the hardest thing is finding our footing on this new land we find ourselves. We can’t fill either from an empty cup. I also found getting to sleep issues and finding good sleep had helped all around. But I couldn’t do anything if my drs didn’t listen to me. And they don’t always listen. Most ignored me even when I have major serious medical issues needing surgery even. Drs would rather send women to psych than treat. Plain and simple! We have to fight this to get help. I had to fight 20s-33 to get help! I saw in my mid 20s a rheumatologist Kaiser pacific beach ca she didn’t read or look at my chart or labs or me! She said she had real patients to tend to and I was not to see another until 33! Then dx after dr waiting on dx because he wasn’t sure because it’s a man who have this AS he said. Nope wrong sir women get it too! Fusion of spine was nail on the dx! He dx me then. And biologics trials started. A great partner and a good Therapist goes a long way! I am a medical zebra you won’t meet another like me or anyone who is not more determined to never give up! Stand tall! ❤️ Keep looking for drs who will help and fire those who don’t. You deserve help! You aren’t alone.

I have been in a mask 😷 since 2017! I wear it everyday when out! Mostly I only get to go to drs and can’t explore the world as I once did. When I was dx I was walking 1-10 miles a day. Finally had to accept my body can’t handle more than a block now. The hard realities some may never know.

My dx is long mostly these – pcos, pericardial effusion mild, trigeminal neuralgia, fibrous dysplasia polyostotic, rheumatoid arthritis, ankylosing spondylitis, sjogren’s, raynaud’s all diagnosed & mild PsA but waiting still 2 years on dx still for that just what my dr said rheumatologist it likely is. I also have malar rash on face since 20s. Most likely my AS started 19-20 when I have my daughter. JRA still sometimes have issues with RA. These are just small amount of my whole 2 page dx list. 😔 It’s too much to type or speak. Pardon typos I am also dyslexic.

I go every 5 weeks to cancer center for my Remicade infusion I do pre meds too. I show up ready to do my job. Which is to sit and get my meds. Hardest part is always my veins and I’m ready for it every time. The nurses say I’m a great patient as I’m often the easy patient even with all this wrong with me. I’m not rainbows and unicorns but I try to smile through it all and just doing like I said. The best I can.

(Photos of me over the years in no order at all 😂 and last two are recent at least.

Top photo is my husband and I at a wedding I was in a wheelchair at time but also had a cane. Today he holds my hand and I waddle when I walk. But I walk! And the dog is my auto immune warrior dog archer who also has auto immune too. He is my bff! Loyal always like me.)

Oh and I do have white hair! Bring it on life I can take it! 😂 My tiger stripes. 

A.S. Face 2241: Shawna

 A.S. Face 2241: Shawna

Hello my name is Shawna M. Ashley 🌺

Diagnosed with Ankylosing Spondylitis, Arthritis, Osteoarthritis for 35 years now… keeping my chin up with my treatments and taking my best care each and every day 🙏🏼♥️ and beyond grateful, thankful and blessed for each day forward. 

Thank you for having me!! 🥰

  A.S. Face 2240: Lauren

My name is Lauren and I have axial spondyloarthritis. I’m 31 years old and was diagnosed July 2021. I was a horrible 4 years. No one and I mean absolutely no one believed anything was wrong with me, even the doctors. It started with sleeping for days on end to barely being able to walk and having a very obvious limp on my right side. So getting my diagnosis although upsetting felt at the same time a small victory. I know what I’m up against now. If you have just been diagnosed please don’t be afraid, you can still live your life. I’m a single parent , running a business and just came back from a solo trip to Edinburgh. I have to pace myself but I won’t let this disease ruin me x

A.S. Face 2239: Theresa

 A.S. Face 2239: Theresa

My name is Theresa. I am a mom to 3 a 19 year old boy, a 10 year old medically complex special needs warrior little boy and my 4 year old girl. I am a wife. I’m a pediatric respiratory therapist. I live in Pennsylvania. I have had chronic back pain since I was a teen. At first my spine was fractured from abuse at 15 so that assumed it was that. That healed and I had chronic back pain since that I dealt with as I thought it was from the fracture. I had uveitis that was treated by my eye doctor with steroids. Two courses later it was not clearing up so they sent me for blood work and my hola-b27 gene came back positive. I was sent to a rheumatologist who ran an mri and diagnosed me with AS. That was 7 years ago.

A.S. Face 2238: Lisa

 A.S. Face 2238: Lisa

Hi my name is Lisa. I was diagnosed with Ankylosing Spondylitis when I was 20 years old I am now 37.

I am living in Northumberland in United Kingdom

A.S. Face 2237: Malise

 A.S. Face 2237: Malise

I was diagnosed with Ankylosing Spondylitis in 2019. I was 21 at the time; I was lucky to have a quick diagnosis of 6 months but that was because I was persistent in finding out what was wrong after some many doctors just told me ‘I was overworking myself’.

The past 3+ years have not been easy; I have gone from having no health conditions to having an abundance of them. At one point in time, I was on 18 meds a day. I’ve been on opioids, I’ve done physiotherapy, I’ve had side effects to medication, I’ve had more X-rays and MRIs than I can count, I’ve had uveitis, I’ve had costochondritis, I’ve had surgeries, I’ve worn back braces; it’s been exhausting.

You become a ‘medical mess’; that’s how I describe myself whenever anyone asks me to explain my medical status and it’s debilitating. You start to hate yourself and your body and just want too desperately find a way to make it better, but sadly there isn’t.

It’s an ‘invisible illness’, people don’t believe you when you say you’re struggling to get out of bed and walk, people don’t believe you when you must cancel plans because of pain or just pure exhaustion.

That’s the saddest realization, there’s no cure; there’s only management. You never know when you’ll have a flare up, you’ll never get better, you’ll never be healthy again.

Although there is so much sadness that comes with this condition, there are rays of light.

You become your own advocate and you really know your worth. I have never and will never let anyone speak badly about my illness. You gain an understanding of how important every opportunity is and how you must not let an illness define you. You learn to celebrate the little things, I never once thought I would get excited over lessening my medication or when you wake up one day with minimal pain. But you do, you learn to value life on a whole new level.

With this illness I have really learnt how to love myself, illness and all.

You also meet an amazing community to help you through the hard times and to be there during the good times.

I’m still not better and I never will be and I’m okay with that. I just want to let you know that it’s okay that it’s hard and it’s okay that you’re scared and worried and upset and angry. I don’t think those are emotions I’m ever going to stop feeling. My heart goes out to you all and know I have immense love for the AS community and the people that support us. You’ll always be strong to me and I’ll always support you.

It’s hard and I understand that, but remember that AS isn’t who you are, it’s just a part of who you are.

A.S. Face 2236: Kari

 A.S. Face 2236: Kari

A.S. Face 2235: Grace

A.S. Face 2235: Grace

A.S. Face 2234: E Christie

 A.S. Face 2234: E Christie

I was diagnosed on 2005 with Ankylosing Spondylitis. I was diagnosed with Crohn's Disease in 1998. Had Crohn's my whole life just couldn't get it diagnosed. The A.S. started giving me trouble when I was about 19.

A.S. Face 2233: Catherine

 A.S. Face 2233: Catherine

A.S. Face 2232: Ambi

 A.S. Face 2232: Ambi

A.S. Face 2231: Phyliss

  A.S. Face 2231: Phyliss

My name is Phyllis, and I was diagnosed with AS on May 15, 2017. I had to see 4 Rheumatologists, before anyone would listen to me and my Family Doctor. I've been trying since 2011, I also suffer with Fibromyalgia and IBSD. So, I tell anyone don't give up, when you know your body.

A.S. Face 2230: Angela

 A.S. Face 2230: Angela

This is my mother and I we both have AS hers is completely different than mine. We both tested positive for the gene.

A.S. Face 2229: Nora

 A.S. Face 2229: Nora

This is my daughter and I we both have AS hers is completely different than mine. We both tested positive for the gene.

A.S. Face 2228: Kathleen

 A.S. Face 2228: Kathleen

My name is Kathleen, I am from Washington state, and I have AS. Everyone’s journey is different, and that’s okay. A few years after having my daughter at 31, I started having terrible pains in my mid back. It felt like someone took a sword and pushed it through my back out through my chest. I was training for my 3rd half marathon and thought I had pulled a muscle or something worse. A year later, after multiple doctors throwing everything at the proverbial wall and seeing what sticks did I finally had a Rheumatologist tell me that I had AS.

I went through years of mourning for who I was before AS. Biologics have given me my life back, and I have learned over the past 12 years to find alternatives to things I love. Instead of running, I hike-and WOW, have I found some gorgeous places. This picture is of me hiking in the Olympic National Forest. Some days are worse than others, but I have a wonderful family who supports me and cheers me on no matter what.

You may only be one person to the world, but you may also be the world to one person

Washington, United States of America