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 2103: Sara Wier

A.S. Face 2103: Sara Wier



My Story:
I was diagnosed with AS about 4 years ago. I was working in a microbiology laboratory in college where we got to work on many different staining techniques for examining many different types of bacteria. So, it wasn’t a surprise when I came down with a pretty bad respiratory infection that fall. Little did I know that this infection would change my life forever.
My AS started out as elbow and neck stiffness. I couldn’t straighten my elbow or move my neck from side to side. I had difficulty sleeping because I couldn’t sleep on my sides or stomach, which I was used to. I went to the doctor when I went home for Christmas. The doctors weren’t sure what was wrong, but they subscribed some anti-inflammatory medications which seemed to help.
While on Christmas break, I helped my family out at our chocolate store, working on my feet for long hours, so when my feet started to ache, I assumed it was my uncomfortable shoes or the long hours on my feet. Over the next few weeks my feet got so painful and swollen I could hardly walk or fit them into my shoes. What normally took me 10 minutes to walk to class would take 30. I was in so much pain, I was constantly grumpy and I didn’t like who I was starting to become. A guest speaker once told me “Hurt people, hurt people,” which resonated more with me than I think he knew.
I had trouble standing, bending down, or doing simple chores like laundry or cooking. I soon went to the doctor because I knew something was wrong. Luckily they tested me for HLA-B27 and quickly referred me to a rheumatologist. It wasn’t long before my rheumatologist told me I had Ankylosing Spondylitis. He sent me home with a stack of papers and an initial treatment plan, which included taking 9 Advil a day.
I was confused. I never had any back pain and I had never heard of Ankylosing Spondylitis. When I thought of arthritis I thought, like most people, that arthritis only affected the elderly. AS is genetic. My grandmother had osteoarthritis, but there was no other reason for me to suspect my diagnosis. Why do I have arthritis? A question I still do not have an answer for.
Over the course of the next 3 months my rheumatologist had figured out a treatment plan that worked for me. Within 6 months I could run again. I had forgotten how it had felt to run and I got so much joy from being able to be active and enjoy the activities I love, like playing basketball and hiking. I had received a gift in disguise.
My condition improved and I recently graduated with a masters in biomedical engineering. I work at a medical device company designing new and exciting devices to help people like myself with many different medical conditions that don’t have cures.
My AS is invisible, though I experience pain on a daily basis and have permanent joint damage in my feet. Just because AS isn’t always visible, doesn’t mean it isn’t serious. I have good and bad days, depending on how much I push myself. I have recently had to stop playing basketball, which I have been playing since I was in elementary school, due to hip pain. My rheumatologist and I have hoped that over time, I could come off of my medication or reduce my dose. However, it seems unlikely even though the side effects can be serious.
More than anything AS has given me a renewed joy for life. I realize that I might not be able to do the things that I love forever so I make it a point to do as much as I can, while I can. I have a passion for helping others and am trying to use my AS to do so. I have become involved in the Arthritis Foundation through fundraising, volunteering, and participating in events. Next year I am participating in a 525 mile bike ride down the coast of California from San Francisco to Los Angeles to raise awareness of arthritis and raise money to help find a cure! I also hope to spread more awareness of AS within the Arthritis Foundation.
I am grateful for AS because even though it has caused me pain, it has shown me all the things I have to be grateful for and who I really am. I am a completely different person than I was four years ago, and I have my AS to thank.
Thank you so much for reading my story! You have given people a platform to tell how AS has affected them and even if no one else reads our stories, you have helped us all. I hope my story can help others as well!
If you or anyone you know would like to donate to the Arthritis Foundation and help me participate in the Central California Coast (CCC) bike ride, please follow the link below (all proceeds are tax deductible):

https://events.arthritis.org/index.cfm?fuseaction=donorDrive.participant&participantID=48529

A.S. Face 2058: Don Taylor

A.S. Face 2058: Don Taylor



I was officially diagnosed with AS in 2012 after seeing endless and often clueless doctors for over a decade. No one even thought it was AS or tested for it.

I had misdiagnosis one doctor after another and so-called specialist after the other and no one could explain why I was in so much pain, why I had swelling in my joints, why there were times when I got out of bed in the morning I would completely collapse in pain and couldn’t stand or support myself.

I had always been active, working 8-12 hours a 5 days a week, outside in Las Vegas weather. But my mobility and health were declining and I had unbearable pain radiating from my lower back, down both legs. My neck was unable to fully turn in either direction and it was painful to breathe several times a month.

Finally, I moved from Las Vegas to Southern California and after a long search and more “I don’t know” diagnosis I found a primary Dr. who said I needed to see a rheumatologist and get Xrays and MRI. After 12 years I was told by my rheumatologist who specializes in AS that I did indeed have advanced AS and I would later learn I also have AS related complications including C.O.P.D. and Angioedema.

It’s a struggle every day to just get out of bed and get moving. My awesome wife of 33 years now has to help me put on my socks and pants many days because I can’t bend down, and she never complains. Some days I’m able to live a somewhat normal life yet other days the pain, fatigue and brain fog reach unbearable.

But as my daughter tells me, your a Taylor and my daddy (she’s 36 lol) and you don’t get to give up or give in to AS. I’m blessed with having a family to help and understand the best they can. And blessed with having an extended AS family of warriors online to help each other and know what life with AS is really like.

Don Taylor
Garden Grove, California, United States of America

A.S. Face 2028: Lanelle

A.S. Face 2028: Lanelle



As I live each day, may I make a difference and touch one heart . . . each day it is my goal to bring smiles and laughter into a soul.

A.S. Face 2014: Mary Kreusel

A.S. Face 2014: Mary Kreusel

A.S. Face 2013: Stacy

A.S. Face 2013: Stacy



My name is Stacy and I am 38 years old. I am a CA native born in Bellflower California a Los Angeles suburb. I currently live in Orange County with my family for the past 12 years. I have 3 kids, 10, 6 and 5. I was misdiagnosed for years in my early 20's as having seronegative rheumatoid arthritis. The medication never worked fully and symptoms were never debilitating until I had my 3rd child.  I had new insurance by this time so I went to a new rheumatology dr.  It was then they gave me the news my inflammatory levels were sky high and I had tested positive for HLAB-27. I had no idea what this was or what it meant. The dr started me on different medicine right away, but it wasn't working. I was losing mobility in my legs quickly.  The Dr decided to start me on remicade right away. I was scared, hesitant, but needed something serious to get my life back. I have 3 kids I had to get moving again, there was no "no" accepted. It worked!  I did have to go through several insurance woes dealing with approvals and costs. I have learned with this disease that even Dr's don't know everything. You have to listen to your own body and expect nothing but the best for yourself. 

A.S. Face 1996: Misty Collins

A.S. Face 1996: Misty Collins



My name is Misty Collins I to suffer from this awful disease ...I always wondered where I would be able to get something like this....bring awareness...where there is none...Turns out I've had this my whole 47 years of life it explains a lot of the pain I would have when I was younger and didn't know what it was..until 5 yrs ago...I couldn't move I was sitting on my couch pain would just subside up  my legs .. undescribable pain I would just cry...so painful...no one understands but us..I remember going to pick up my medicine I couldn't move I had to ask someone to help me..ill never forget that day.

A.S. Face 1995: G. V.

A.S. Face 1995: G. V.



All seemed normal as I was growing up. When I reached my twenties it was first IBS, then, during a pregnancy, severe SI joint pain set in. After that, it was plantar fascitis with very large calcineal heel spurs. I was also dealing with some elbow and knee pain. I asked my doctor if all these things could tie together and she laughed at me.
The pain in the feet would not stop so I was sent to orthopedics.  By this point many years had gone by.  They could not calm it down either so they ran some tests.  The doctor got serious and said I would need to go to rheumatology. The rheumatologist  handed me a piece of paper naming the types of arthritis and circled "spondlyoarthritis".  He told me to take a pill every day and see him in a year.  Thus was my journey. Joint by joint, this disease tries to take the fun out of my life.
In my mid 50's I started playing with my diet. I gave up wheat and sugar. I was able to start walking, and then hiking.  I even hiked Mt. Whitney, the highest peak in the continental U.S. I was the slowest one on the mountain, but I got it done.
I've been dealing with this disease for more than thirty years now with daily pain and struggle and with doctors over the years  who first disregarded it because I was a woman and now disregard it because I am too old.   I am thankful for a helpful husband. God has been good to me in so many ways.  I have learned compassion for others who suffer.  And I will continue to seek things that bring  joy as long as I am able.
California, United States of America

A.S. Face 1983: Jane Bruckel

A.S. Face 1983: Jane Bruckel

Co-Founder of Spondylitis Association of America, 

The first President of the Board of Directors and the first Executive Director

In 1983, when I co-founded this organization, there was no information available about AS – not a single pamphlet and, incredibly, only very few doctors who were interested in the disease. So our goals in those days were modest: to overcome our sense of isolation, to find out what worked best and what didn't work, to cope with frustrating challenges, and to celebrate our shared successes as we learned how to live with this disease.

We had no thoughts then of White House visits or glittering international conferences, no plans for exciting multi-million dollar research programs and a unique partnership with the National Institutes of Health, no dreams of ground-breaking genetic studies to solve the mystery which, it turned out, had plagued mankind since the days of the Pharaohs. (We also had no one to tell us we were charting a near-impossible course.)

I look back – and it seems not that long ago – to our first meeting – the very first meeting of AS patients in this country. We found camaraderie in the shared experiences of misdiagnoses and lack of information. Our anger quickly turned into action, and my home became the grand central station of volunteer activity. As we sat around my dining room table, we charted the course for accomplishing a series of “firsts” in this country. We planned and published the first comprehensive book on AS written for patients, along with, eventually, hundreds of pieces of other literature. We held the first of what would become annual educational symposiums for patients and doctors. Later, we issued audio and video exercise tapes. We organized patient support groups throughout the country. We gathered publicity and celebrities to our cause.

I look back as well to so many heart-warming letters you have written. In one, a man who turned his life around said, “I want to thank SAA for being a significant contributor to me and my family's success.” In another, a woman who had not met me generously credits me for improving the lives of thousands through SAA's patient support groups. I remember my great pleasure in meeting many of you all across the country. In my files, I also find reports of projects, from inception to completion, which recall the many dedicated people who have worked with me over the years. And I take great pride in the solid accomplishments that SAA has achieved to make life better for all of us.

For me, after 23 years at the helm of this organization, the time has come to retire. It's always hard to say goodbye, but I am confident that I am leaving SAA in the capable hands of a wonderful volunteer board of directors and staff who together will never cease working to pursue our mission.

With all our progress, there is still a long road ahead, but SAA enjoys a time of opportunity and momentum. I will retire in June 2006, but I am not really saying goodbye to you. My dedication remains as strong as ever, and I know you will join me in continuing your support into the future. Together, we can end the tragedy of this disease forever.

JANE BRUCKEL
Co-founder & Retired Executive Director

A.S. Face 1923: Wendy Parry

A.S. Face 1923: Wendy Parry

Diagnosed December 2017.

A.S. Face 1887: Tammy Farrell

A.S. Face 1887: Tammy Farrell




I was diagnosed with Ankylosing Spondylitis 5 years ago. My story seems similar to many I have read. Growing up I had issues with Asthma, Raynaud's and hypothyroidism. 9 years ago I had acute valley fever and was very ill. In healing I began having joint pain and back stiffness in the morning. Other issues that came up before being diagnosed was Diverticulitis and Iritis. When I had reoccurring eye inflammation that wouldn't go away the ophthalmologist ran several tests including HLAB27. He said I think I found it, you are positive and you need to see a rheumatologist. He has a brother with A.S. and urged me to follow up. What a journey since then! My A.S. Remains active and I'm still trying to find the right biologic for me. 2017 was rough for me as I lost my job, had shingles twice as well as pneumonia and have been diagnosed with lung disease. MRI shows some fusion and 2 herniated disc as well as scoliosis. I'm also in need of a total left knee replacement that is complicated and will be done is Stanford when the time is right. I'm now 55 years old and working at taking good care of myself. I'm thankful for my family and A.S. friends I have met and love their support. Much Love, Tammy

A.S. Face 1876: Kelsey Newman

A.S. Face 1876: Kelsey Newman



I am on the far left with my mother on the far right.

A.S. Face 1875: Chris Porfilio

A.S. Face 1875: Chris Porfilio



I am on the far right with my daughter on the far right.

My name is Christina Porfilio and this is my story.

I am 53 years old. I began having back issues when I was 20. I went to many doctors and was told my back was just in spasms or I had a pinched nerve.

In 2013, my doctor told me I had back pain because I needed a better bra. Ok. He agreed to do blood tests because I completely broke down and started crying. I told him that I don't know what is wrong with me, but I know there is something more than a bad bra.

The bloodwork came back ANA positive so he sent me to a rheumatologist and a therapist (he said I was depressed) and to a pain mgmt doctor.

The rhuemy did more blood tests and said, you are ANA positive but don't have enough symptoms for me to call it lupus, another doctor might but I won't. She sent me on my way. Therapist sent me to cognitive therapy. And the pain mgmt specialist started sight injections in my back.

I lost my job about this time for missing too much work even though I was out on short term disability. So, I lost my insurance.

New insurance sent me back to the rhuemy but I saw a different one at the same office. He checked and said I had fibromyalgia, then sent me to a class for biofeedback.

My new primary care physician took mris and sent me to a new pain mgmt doctor. She couldn't believe how bad neck looked and started epidurals in my neck. No relief.

In June of 2015, I tried to overdose. I thought I was insane because I wasn't getting answers that made any sense to me. The pain was incredible and I was angry every morning that I woke up because I woke up.

The new pcp sent me back to the same rhuemy office and I saw a third doctor there. My first visit he spent over an hour with me. Sent me for more bloodwork and I was HLA-B27 positive. Mri showed inflammation of the si joint and in the neck. He told me I had ankylosing spondylitis. I had never heard those words before. He started me on biologics immediately. Things were finally making sense.

I am on my third biologic and have a medical team that I feel like listens to me for the first time in my life. There are days when I am still feeling betrayed by my body, but I'm not as angry at it as I once was.

Unfortunately, I've passed this horrible disease down to my beautiful daughter. I hate that. 

A.S. Face 1873: Stacie Robertson

A.S. Face 1873: Stacie Robertson



I was diagnosed with AS in the late 80’s after a year of having an iritis and X-rays of my hips and being told I had the hips of an 80 year old. I was 18 yrs old at the time. It’s been a long road with many medications, replacement and reconstructive surgeries. I’ve gotten some relief with the TNF-a blockers and I continue to work. In the years between diagnosis and now I’ve built a career on helping folks with disabilities live their best lives. I recently moved to sunny (and dry) California and am a college professor.

A.S. Face 1839: Brandon

A.S. Face 1839: Brandon

A.S. Face 1807: Ria Espinosa

A.S. Face 1807: Ria Espinosa




I’ve been diagnosed with AS and was on Remicade infusion for 7 years, until it lost its effectiveness a couple of months ago. I’m on Humira and Methotrexate right now and it is going good, so far.

California, United States of America

A.S. Face 1803: Keilan Gray

A.S. Face 1803: Keilan Gray

I was diagnosed with Ankylosing Spondylitis at age 15 and I am now 18 and still in pain but going strong. I wanted to be a part of your movement to bring awareness to others and bring patients together.

California, United States of America

A.S. Face 1770: Deborah Lara

A.S. Face 1770: Deborah Lara

Hey, HI! I’m so very sorry if you are reading these faces because you have been diagnosed with Ankylosing Spondylitis but I want you to know there IS HOPE! It will take dedication and work but I believe you can get some relief of these debilitating symptoms. My name is Deborah Lara and I’m 49. My grandfather was active and even played minor league baseball in his youth. An injury set his AS off and he fused bent over. Horrible devastating symptoms. After he passed away in his 60s, it took years for my uncle to realize he also had AS. Recently, my sister and I found out we have AS. We are HLA-B27 positive! Both my daughters 20 and 17 have many symptoms of AS but are HLA-B27 negative. We have a great Doctor who is an Infectious Disease Doctor and Rheumatologist. We take supplements, probiotics, prebiotics, pain meds, muscle relaxers, benydryl or clariton or alkaseltzer cold/flu effervescents, a teaspoon of baking soda in water daily, HOT SHOWER DAILY, try to avoid gluten, starches, and sugars, stretch, use heating pads or heat cream, and take antibiotics to treat Lyme Disease we acquired from a camping trip five years ago. The antibiotics also keep the Klebsiella bacteria, usually present in AS patients, down. We do other things as well. If you FIGHT instead of giving up, you can build a life WORTH living. Ask for help from those willing by communicating EXACTLY how they can help you but don’t abuse their kindness. Let them live their life, as they are not sick.

A.S. Face 1746: Samantha Yates

 

A.S. Face 1746: Samantha Yates

 

My name is Samantha Yates and I have been battling AS since March of 2014. I originally went in for an LONNGGG overdue eye exam and was referred from optometrist to ophthalmologist, and then to UCSF for further review. I have advanced anterior uveitis with a cystoid macular edema (a cyst on my retina!). Within a few weeks of that diagnosis they found out that it was a systemic issue and I am HLA B27 positive, leading to the AS diagnosis.
With the help of Remicade, Methotrexate, and some painful injections to the actual eye (and a few new pairs of sunglasses, of course!)- my symptoms were under control for almost a year. Unfortunately, with the change of insurance I am struggling again to basically start over with treatment and a new team. AS/Uveitis have eaten away all the color off my right eye and I have some bad “joint days”, but with the help of my #1 supporter my mom- I am hopeful things will work out in the end.
Attached is a picture of my mom and I and you can notice the differences in my eyes. A second picture is me in my happy place- the sun!!! I’m sure you can relate to my warm weather obsession J
Thanks for providing this outlet for sharing!!
California, United States of America