A.S. Face 2208: Kirsten Conrad

 A.S. Face 2208: Kirsten Conrad

My name is Kirsten Conrad. I was diagnosed at age 30 and have multiple family members with a history of Ankylosing Spondylitis. After having my second son, I started to have pain in my elbows and lower back. After ruling out other issues, the diagnosis of AS was thrown out. Throughout my life, doctors had told my father (who also has AS) to watch my brother, but I was not an issue since I was female. Needless to say, the diagnosis was a shock for my entire family.

After being diagnosed and sidelined from many of the things I loved over the course of the first 6th months of being diagnosed, I simply decided I was no longer willing to let AS control my life and ability. I started back with training for a half marathon, and completed my first half marathon one year after my official diagnosis.

It took some work, but I have been able to switch my mindset on AS. When I was first diagnosed, it took a long time for me to accept and move forward. Now, I use my AS as an additional motivator. I coach teams for both of my kids, work with preschool children, volunteer with our school’s PTA, and travel internationally with my husband.

Simply put, life is short and AS part of my life, but does not control it. I plan on continuing to live my life to the fullest!

Kansas, United States of America

A.S. Face 2076: Ashley Clark

A.S. Face 2076: Ashley Clark



I am 40 and diagnosed with AS at 38. For years I knew that something was not “right”. After a stint in the hospital, a zillion blood tests and an MRI I was diagnosed. It has been a very tough journey as fusion of my SI joints had already occured and I have fibromyalgia that also causes debilitating pain. Right after I was diagnosed my husband had a knee replacement and had complications which resulted in another surgery and daily infusions. Shortly after that ordeal my oldest son at 17 had a stroke on Halloween 2017. Needless to say it has been difficult to focus on me and getting stronger. I have tried Humira, Enbrel and Xelganz with zero relief so feel like the pain is something I must learn to cope with. I work full time in a demanding sales job but I think I will have to eventually resign because the stress aggravates my symptoms. I used to be an avid runner and embraced life going 150%. Now if I get 50% go I feel that is a win. My hope is for awareness and for walls to be broken down so others understand the severity of this disease.

Thank you for being a face for AS!

Ashley Clark

A.S. Face 1862: Debra Harlow

A.S. Face 1862: Debra Harlow

A.S. Face 1774: Kristen Spiller

A.S. Face 1774: Kristen Spiller

My name is Kristen Spiller. I was diagnosed with AS in June of 2016. I found out while filling out information for my rheumatologist that my father has AS as well. Prior to being diagnosed I had been dealing with the pain from it for about 7 years. During those 7 years other doctors simply told me that it was basic sciatic pain or even that the pain was from me being overweight. “Lose weight and the pain will go away”. After I was first diagnosed it got to me hard. I was relieved to finally have an answer but also upset that it wasn’t something that could be fixed. Just recently I was told that my dads lower vertebrae have started to fuse. Not to long after that I decided I wasn’t going to let AS get the best of me any more. I have an 8 year old daughter and I want to be able to be active with her so I have started going to my local gym. I have decided I am going to rebuild my muscle strength and start doing stuff with my little girl again.

A.S. Face 1422: Heidi Barnes

A.S. Face 1422: Heidi Barnes

Im a 53 year old female , with AS . Ive always had low back pain and was very lethargic in my teens years . Years of going to the doctor with no results . I had occular orbatil edema , low back pain left wrist , and achillis tendon pains .

I got a diagnosis in 2008 from a rhumy. I have had an episode of optic neuritis in my left eye was blind for almost 6 weeks . Vision came back but i dont get much light in that eye .

Increased pain . Lortab in day  , demerol and baclophen at night .

Going to arthritis Doctor soon for a check up possible methtrexate .:(

Thank you all for your stories .I hope to meet some one with AS in person some day . Keep on the positive side . I pray a lot ..

A.S. Face 1411: Carrie Daniels

A.S. Face 1411: Carrie Daniels

A.S. Face 1220: Sharon Sanders Willey

A.S. Face 1220: Sharon Sanders Willey

Growing up I always had trouble keeping my shoulders back,I was the kid who walked around with my hands in my back pockets thinking that would help,when I was 21 I got the flu took weeks to recover and after I did I began to have leg/hip pain.It would come and go over the next year so I went to the Doc….but guesss what ,I was going to have my first child two more and years later seeing lots of Doc(with no answer) 2 bout’s with iritis,one day I am sitting in the report room taking off my snow boot’s and my Doc was sitting watching me,and say’s “Is that as far as you can raise your leg?”I just laughed and said yes…..lights must have been flashing in her head all the things I had complained about started to make sense,special x-rays and blood test and a 29 year-long mystery is solved!My girl’s ask me later if I was mad…..nope ,just glad I’m not crazy!I know I’ve left a lot out but I’m not very good at this and the grammar mistakes would get worse.I can honestly say this group has been the best thing AS has done for me.
Thank You all for having my back and sharing your pain-won wisdom.
Sharon Willey
Kansas, United States of America

A.S. Face 1181: Jed Massoth

A.S. Face 1181: Jed Massoth

My name is Jed Massoth, I live in Wellington Kansas and I have AS. I was diagnosed around 2005 but started having issues in 2000. I am a member of the Facebook group and it has changed my life being able to read and listen to other peoples stories. My fiancé Rachael Moore has been amazing at being supportive and is doing everything she can to learn about the disease to help us both down this road we will travel.
Kansas, United States of America

A.S. Face 1053: Jodi

A.S. Face 1053: Jodi

My name is Jodi. I am 47 years old and I am a wife, a mom, a grandma, a daughter, a sister, a cousin, a niece and an aunt. I have been diagnosed with AS. My rheumatologist actually gave me a “preliminary” diagnosis in 2007 after I tested positive for the HLA-B27 gene. My Grandma had RA and my 1st cousin has Lupus. I left the office and immediately began researching. Once I read the horrible, worst case scenarios, I went into complete denial and decided then and there that there was no way I could have this disease. After two failed marriages, I had just met “the one” and we had just been married. We bought a house and things were good. I didn’t have time for this disease. I was too busy being happy with my new life. I continued to see my rheumatologist through the next year, but the co-pay on my insurance was pricey for a Specialist visit so eventually I stopped going. Besides, I was feeling pretty good, no major pains, just what I considered to be the everyday aches and pains that come with aging and arthritis. We had never really found a permanent medicine that worked so I wasn’t on any specific medication. I was very active as a teenager and young adult with dance, tumbling and cheerleading and had suffered a few injuries so my pain was nothing more than I expected for my age. I played the yo-yo game of losing and gaining weight through most of my adult life and I’m sad to say that the gaining part has won. I am at least 80 pounds overweight and I know that doesn’t help my situation; however I can’t blame my pain on just my weight. I began experiencing pain in my abdomen in 2011. They attributed this pain to my gall bladder and I had it removed in June of that year. I felt better for a short while but in March of 2013 I ventured into a new sort of pain. My beloved Kansas Jayhawks were progressing in the NCAA tourney and we did not miss a game. We were in the crowded, downtown Power & Light District in Kansas City when the first attack hit me. Three more times over the next 3 months it would hit before I was taken to the ER by ambulance. The pain was so severe I could only explain it like a labor contraction at its peak that lasted for 10-20 minutes before it would subside. They ran tests but nothing conclusive and they suggested I follow up with my regular doctor. After seeing my regular doctor,they put me on Pantapropozole and I had an endoscopy. This showed a small hole in my stomach and thinning of my stomach lining. They came to the conclusion that it was from all the ibuprofen I had been taking to control my arthritis pain. They cut me completely off!  Since June 2013 I have had nothing more than Tylenol, which of course does nothing for inflammation. Over the last few months I have been experiencing more severe pain in my lower back, hips, shoulder blades, hands and feet. When the pain in my hips began waking me up at night, I decided it was time to go back and face the music. My former Rheumatologist had since expanded his office and because he was not available until sometime in November, I chose to see one his partners. She was AMAZING!! In one 30 minute visit, while scolding me for taking so long to come back, she made me feel so comfortable. She actually diagnosed me with AS and began to lay out all my options for medication as well as their side effects.
My research began anew and I have been able to connect the dots. I’m positive my stomach issues stem from AS. I can see a lot of things from the last 5 years that can be attributed to AS and I was just not educated enough to put it together. One of the things Dr. Baratham said that really made sense to me was this: “The problem with most doctors is they are only concerned with the issue that affects them. They fail to look at their patients as a whole person. For example, when they took you off all ibuprofen, or NSAIDS, they failed to take into account what you were taking it for and gave you no options for helping the inflammation. They were only concerned with your stomach as an individual part and not the whole picture”. So I am now continuing the journey with a fresh set of eyes, which fortunately have no signs of iritis. I have been researching and have come to terms with my diagnosis. I need to lose weight and my doctor has highly recommended yoga for flexibility. I have read so many stories of people who are really suffering from this disease and I thank God that I feel as good as I do. I know that may not always be the case. I will continue to fight! I will get through this with the support of family, friends and faith!
Kansas, United States of America

A.S. Face 0967: Ashley Romereim

A.S. Face 0967: Ashley Romereim

I was diagnosed with AS at 16. (I’m currently 25.) My grandfather had it, my father has it, and my younger sister has it. She was diagnosed at the ripe old age of 13. It’s made life hard, but I’ve finally been able to get back to work at a high school as a para full time, and I go to school full time for my education degree. I had a few years where I was completely unable to do anything–I felt like a zombie. But I got up, got things turned around, and now I power through the pain. Don’t get me wrong, I complain. Who doesn’t? Sometimes, just someone to listen helps with dealing with this disease. But I’m fortunate to have an incredible rheumatologist and amazing nurses, a very supportive family, wonderful friends, and a loving, caring boyfriend who helps me through every little bump and mishap. It’s been a long, hard road, but I have such a support center that I have nothing to fear. I’m a face of Ankylosing Spondylitis!
Kansas, United States of America

A.S. Face 0795: Colin Misconstrued

A.S. Face 0795: Colin Misconstrued

My name is Colin Misconstrued (yes it’s my real name) and I am from Kansas City. I was diagnosed with A.S. last December. I’ve had psoriasis and psoriatic arthritis for probably 8 years, but nobody ever put the two together. I was probably 8 or 9 when I started complaining about joint pain. It started in my knees, shoulders, and neck. The often response was that it was growing pains and that I should just push on. I’ve had a problem with a stiff neck and migraines ever since. The final straw was last fall when I got so bad, I could barely walk. I finally found a pcp that I liked and was referred to see a rhumotologist. That was the turning point in what would become the rest of my life!
Armed with the knowledge of what is wrong with me, I can move forward fighting my A.S., with more than just luck. I’m changing my diet to a more paleo approach and it seems to at least improve my stamina. I’m not one for taking a lot of pills and can’t really afford the biologics, so I decided to start with the things I can control. My wife has narcolepsy, and together we rely on each other for a lot. I am always looking to connect with fellow spondies, for they can truly understand what my challenges are.
I am very much an adventurer and avid extreme sport junky, which I fortunately get to enjoy with my wife. I figure what the hell, it’s the only chance I get to enjoy this life! I can’t say that my A.S. doesn’t drag me down at times, which is usually the most in opportune moments. I always seem to pull through and live to fight another day….stay strong my fellow Spondies, there is hope out there for all of us!
Kansas, United States of America

A.S. Face 0782: Jeremy

A.S. Face 0782: Jeremy

Hello my name is Jeremy
I was diagnosed with AS just six months ago after showing signs since my teen years. I struggle everyday with horrible pain in my neck, shoulders, elbows, lower back, knees, hips, and ribs. My wife is sometimes overwhelmed by the many doctor visits and labs that I have to go through, but she is hanging in there for me. I’m so glad I finally was able to get some answers and to have found other people with AS so I don’t feel as alone any more.
Thank you Jeremy
Kansas, United States of America