A.S. Face 2124: Lisa

A.S. Face 2124: Lisa



My name is Lisa and I was diagnosed with AS seven years ago. I started biologics 2 years ago and have had some positive results. My symptoms started in childhood, but it was always put off as growing pains or from sports. After I had my first child the pain was excruciating and just thought it was from having a baby. But I couldn’t stand up with my baby in my arms, my knees hurt in a terrorizing way, my back felt like it was crumbling and I was living off ibuprofen, until my stomach started to hate me.

It was a long road to diagnosis. The pain and fatigue is hard to deal with daily. I have two awesome children and a husband who are my world.

This disease can leave you in a bad place at times. So much pain, so much fatigue and feeling like no one understands. I feel like I fake it until I make it everyday and sometimes that is even exhausting. But I will fight! Fight to find a treatment regimen and be my own advocate, fight to be an active mother and wife, fight to be productive and find peace even within the pain.

Support groups for people living with AS has been such a blessing to me! It is awesome to be among people who understand the struggle. Thank you Cookie for creating the faces of AS!

A.S. Face 2019: Misty Day

A.S. Face 2019: Misty Day



37-year-old mother of 3.  I have suffered from fatigue my entire adult life.  Doctor's would check my thyroid and blood count and tell me I'm fine.  My lower back was always stiff, I can recall this as far back as middle school.  My wrists and hands hurt, but it wasn't carpal tunnel.  Then 2 years of plantar fasciitis.  Later "eye infections" would trouble me.  After my third child, I went into a massive flare.  Everything hurt.  I could barely lift my baby.  I'd wake crying.  Life was miserable.   I finally, after 15 years, found a doctor whom would listen.  He ran several blood tests.  When his nurse called to inform me that several came back positive for autoimmune disorders.  I cried tears of joy.  I was happy something showed, something was in fact wrong. I could get answers, after 15+ years of being told nothing was wrong with me. I could get treatment!! I went on to a rheumatologist whom diagnosed me quickly because my primary had done such a thorough work up.  The day I started Enbrel was a happy, yet terrifying day.  I have my life back now.  I don't wake up in complete agony.  I can carry my baby.  I no longer walk with a limp. I have a few small aches and pains that I manage through.  But overall I am happy for the time being.

A.S. Face 1917: Jessica Stetson

A.S. Face 1917: Jessica Stetson



I was told at the end of June 2015,that I had AS. That is when i got put on humiria shots. I suffer every day with this. Humiria stopped working for me and i am on cizimia now. I miss being able to do things without having to rest. I am thankful for my  fiance for his help.

A.S. Face 1428: Rick Edginton

A.S. Face 1428: Rick Edginton

Hi I am Rick Edginton of West Valley Utah I was diagnosed with ankylosing spondylitis in 2014 after a whole host illness over the past 10 to 15 years , it was a relief to  know what was happening to my body.
Utah, United States of America

A.S. Face 1173: Ashley Laughlin

A.S. Face 1173: Ashley Laughlin

Hi, my name is Ashley Laughlin and I am currently living on hill afb in utah. My story I am about to be 27 years old.  I was diagnosed with ankylosing spondylitis in nov 2013 after trying to convince my many drs that all of my pain and symptoms were related for about 5 years.  My rheumatologist says my a.s. symptoms started when I was 8 years old, and that it was a time when drs didnt really consider children esp girls to have a.s. I am very fortunate that my husband is active duty air force and we have moved to hill because it has brought me to my great team of drs. My greatest joy and accomplishments in life are my kids Eme (3years) and Gabe (10 months) they keep me moving and feeling okay all day! Who has time to sit and get stiff chasing two crazy toddlers. Im greatful for being diagnosed after all this time and having answers and a treatment plan. The support I have found from people also suffering from a.s. has been phenomenal.

Utah, United States of America

A.S. Face 1146: Annie Chapman

A.S. Face 1146: Annie Chapman

Hi, I’m Annie Chapman, I’m 33 from Nibley, Utah.  I was diagnosed in August last year, I have been living with chronic arthritis for yrs.

Utah, United States of America

A.S. Face 0714: JoDeane

A.S. Face 0714: JoDeane

I want to thank you for your AS site it is so wonderful to know I am not alone. It is a very empty world when you don’t know others with this disease. I was finally “heard and diagnosed in March of 2012. YAY!! It was such a relief to know I’m not crazy or lazy. I think getting excited and happy to have it named threw my family for a loop. They must have thought I was not grasping the reality of it. I was in shock as well so I felt a bit numb for a few days. I had been told a lot of different things during my 12 years of pain, exhaustion, fever, chills, infections and depression; previous wrecks caused arthritis so you need to exercise, osteoarthritis, rheumatoid arthritis, systemic lupus, calcification of the kidneys, your bad teeth are causing infection so that will fix half of your problems and of course the famous one…your tests are all negative….we just don’t know. That one was just a way to get rid of me because I had no insurance. I also have cysts that are popping up dangerously close to my lymphatic system and on my spine so now cancer (myeloma) is on the watch list. Oh and now that I have an awesome doctor who wants all of my issues dealt with, my insurance company says nope…pre-existing condition clause…have to wait a year and every appt. is heavily scrutinized for anything even remotely related to my disease. Somehow I wonder if they are even going to cover me after the one year. I also have Arrythmias…yippee! The emotional side is too complicated to even explain to others without this. I had things to do around the house that took the pressure off of the ones who work and gave me meaning and fulfillment. Now to have to sit back and watch all of them do my chores on top of their jobs and responsibilities makes me feel so worthless and vulnerable. I finally realized that acting tough and forging through my chores was taking me down. Not being able to play with the grandkids like I did with my children breaks my heart. Having to say no to invites and trips is hard but it is not worth the cost my body will pay. Having been a stay at home mother I’m finally free enough to have a part time job but alas no job skills nor physical stamina to work anywhere. The lost intimacy with my husband is immeasurable and devastating. He is afraid to hurt me and now I know thanks to one of your stories why intercourse hurts. I thought it was all in my head. It is not easy for the ones who love us. He says he feels like a creep when it hurts me. Getting in the shower is work most days and if I could have a place to feel the hot water engulfing my sore body endlessly I would never leave it. God is my saving grace and having folks to share and vent to is a treasure. Knowledge is power and support is precious. I am considering starting a support group here in Utah as there isn’t one. I see so many sufferers as I waddle around through stores or reataurants. We could call it the Penguin Club.

Prayers and hugs of hope to all of us and thank you so much for sharing and caring Cookie.

 God bless you, JoDeane

Utah United States of America

A.S. Face 0676: Sara

A.S. Face 0676: Sara

Hello! My name is Sara, was diagnosed with AS 10 years ago this month. I was 15 when I was diagnosed, luckily it didn’t take doctors long.I am the only one (so far) in my family who has shown symptoms of AS. I am also HBLA-27 positive. At times I resent this condition, but at times I am grateful for the lessons it has taught me about people, about life, about myself. My AS goes from remission to full blown flare in a matter of hours. For me the worst has part has been my pregnancy and dealing with 3 horrible, scary flares of Uveitis. Right now, I am in the process of managing my pain and flares with Humira. It is a miracle drug! I was fortunate enough to marry a man who loves me despite all of my troubles and is the best support in the world.

It’s nice to have a support group out there like this. This can be such a lonely disease. Especially when no one has ever heard of it! Take care

Utah United States of America

A.S. Face 0642: Jenny Truscott

A.S. Face 0642: Jenny Truscott

Jenny (on left)
Utah United States of America

A.S. Face 0626: Marshall

A.S. Face 0626: Marshall

At the age of twelve i started having terrible pains throughout my body. i was to the point that i could not walk. after a couple months and what seemed to be hundreds of trips to the hospital a doctor noticed when i was 14 that i was B27 +. For the first time in two years someone could tell me what was wrong. i grew up playing basket ball and football riding my bike and doing all the normal kid things. A.S. stopped me for a couple years from doing the things i love but i am now 22 years old and as active as i can be! I have A.S. but its not stopping me!!!

In this picture me enjoying a hunting trip! Doing a little hiking and showing my A.S. who’s boss!

Utah United States of America

A.S. Face 0305: Malea Scott

A.S. Face 0305: Malea Scott

My name is Malea Scott. I’m 35 years old and I found out I had A.S. nearly two years ago. I’m a full time stay at home mom to four gorgeous boys. One of those boys pronounces A.S.; “Yankee-doodle-osing-an-itis”, and consequently, so do I.  I am also wife of 15 years to the most supportive, handsome, loving…lover of a man
I live in Southern Utah. The summers are hot and the winters mild. It is the most wonderful place on earth a person who has this rotten disease could live.  I am able to hike (when I can) and road bike (also, when I can)  amidst gorgeous red cliffs and mostly blue skies.
I usually try to stay as active as I possibly can. I love to road bike, dance, ( I have been on a Polynesian dance team performing routines from the islands, which are wonderful for my spine and hips), and swim. When the weather is mild, I love to garden and get my fingernails REALLY dirty. Traveling is a passion of mine and my entire family. My husband works for an airline, so we have the ability to fly for free. Nothing, absolutely nothing can get my butt off of my couch during a bad flare except for the promise of a traveling adventure with my family.
I have a really high tolerance for pain. I really try to suck it up. When I can’t, my kids, husband, and friends rally around me. I count my blessing every day for them. The last year has probably been the most trying on my spirit as I’ve gone through surgery on my spine, hips, legs and feet. I’ve also been accused of being addicted to prescription drugs, and consequently a thief, faker, and liar by my mom, dad, and sisters. They don’t understand this disease and have not taken the time to either listen to me, or do additional personal research. I’ve completely separated myself from their negativity and have found my flares were also linked to the stress I felt from their insidious scrutiny.
My biological father, Brent, is my guardian angel through the hard times. He also had A.S., and died when I was only a year old due to complications of the disease. He lived in Alaska, did not have access to medication, and was told by doctors to numb the pain with wine or beer (which he did not believe in). Thinking of his circumstances gives me perspective and a great sense of gratitude for access to wonderful medical information, the ability to modify my diet to control the pain, and even medicine to function in my most important role, as a mom and wife.
I understand that this disease totally sucks. But I also know, beyond any doubt, that I have a Heavenly Father (God) who loves me. The lessons I am learning through coping with A.S. are absolutely for my greater good. Service to my family and friends gives me my greatest happiness. I will continue to work everyday, in my personal office of healing, so I may continue to be totally there for those who are totally there for me.
My name is Malea Scott, and I am a face of “Yankee-doodle-osing-an-itis”.
Utah United States of America

A.S. Face 0304: Lisa-Marie Mannion

A.S. Face 0304: Lisa-Marie Mannion

Hi my name is Lisa-Marie Mannion, I am 32 years of age. When I was born I had talipes in both feet, I had to wear plastic insoles in my shoes until i was at the age of 11. As a child i was always complaining that my hips/pelvis, back, knees and ankles hurt but my mom was told that was a good thing, as it meant that the insoles were working and that my feet were being corrected. As a teenager I also complained of hips/pelvis, back, knees and ankles hurt, yet again I was told that it was normal as it was just growing pains. When i turned 18 I became a care assistant. I still suffered the pain on and off but it was put down to constantly lifting the residents. At the age of 27 I feel pregnant with my daughter, who is now 4, my hips and back really suffered but I was told that it is just normal pregnancies related back ache. Being a 1st time mom I believe them, why wouldn’t I after all they are the doctors and midwives they now what they are on about. When my daughter was 4 1/2 months old whilst on the pill I caught with my son.  Yet again my hips and back took a real beating but this time I researched stuff before I saw my doctor, so he couldn’t fob me off like they did with my daughter, when I was 6 months pregnant i was diagnosed with PSD (pubic synthase dysfunction) which was really painful. When my son was 10 months old I suffered with excruciating pain in my hips to the point that my hips would lock up so I couldn’t walk. One night I had enough of the pain and my doctors telling me that it was just a pulled muscle that I went to the local hospital A & E department who ended up giving me strong painkillers and tranquilizers  just so I could sleep and told me to go and see my doctor and tell them that the hospital have requested I come back and see them. That day my usually doctor was off and I saw a locum doctor how listened to me and requested x-rays and blood tests for me. During this time I fell pregnant with my 3rd child. When i was 10 weeks pregnant i was refereed to the physio department as a precaution due to me suffering with PSD with my last pregnancy. I really suffered with this last pregnancy.When my new son was 5 months old I was still getting the pains I suffered when I was pregnant so my doctor said it couldn’t possibly be PSD and that he was going to refer me to see a rheumatologist. When I went and saw the rheumatologist he requested a MRI scan, that was 6 months ago, when I went back to see him he told me that it did look like I had AS but he wasnt 100% sure so he was going to send me to see a specialist how specialised in spondylitis. 3 weeks ago i went and saw my new specialist and after I saw him and talked to him he as said that yes I have AS. Yes I may have this debilitating illness but I’m going to try to not let it stop me from living my life to its fullest. The people who I feel sorry for the most is my children, the oldest is 4 and my youngest is 18 months old, they know that mommy can’t always do all the stuff that they want to do some times. My worst times of the day are 1st thing in the morning, when I need to take my strong painkillers to get out of bed, and last thing at night when the kids have gone to bed as i can finally relax. the hardest thing is when i look at my children and know that there is a slight chance that they may have inherited it from me.

Utah United States of America

A.S. Face 0297: Carl Justesen

A.S. Face 0297: Carl Justesen

I have had A.S. for twenty years now (half my life).  I went on disability in 2003 and have spent a lot of time trying to find ways to better my quality of life.  Sites like this have helped a lot.  Its always nice to be able to try the advice of others when dealing with a disease like this.  I appreciate and respect the time and work put into sites like these.

Toole Utah United States of America

A.S. Face 0273: Hollie Godfrey

A.S. Face 0273: Hollie Godfrey

My name is Hollie Godfrey. I am 39 years old and I live in Riverdale Utah and I was just diagnosed with A.S. in February. I have been in pain for over three years and was seeing a doctor that had no urgency to find out what was really wrong with me. I explained the pain I was feeling and how my chest constantly hurt. He had done some ex-rays and EKG’s but found nothing. He finally put me on a beta-blocker to keep my heart rate lower, which did nothing for me…In January of this year I went to a clinic at the hospital and met my new doctor, a third year resident that told me she was not going to give up on me! Finally some hope!! I wasn’t being treated like I was crazy or just wanted pain meds (which I never asked for). She ordered a series of blood test and found I had the HLA-B27 gene, from there we did a pelvic ex-ray which gave her reason to order a MRI. She was right in her thoughts. Ankylosing Spondylitis. She has referred me to a rheumatologist, which I love!! Great man!! I have been on Hurmira since Feb. 14th, the first dose was like a miracle but lasted only ten days, the second one lasted even less. I have been told it could take up to 4-6 weeks to really feel good, so I am looking forward to that! Its nice to know that I am not alone, all these faces on here really give me comfort and I am glad I found this page…My hopes are high!! Thank you!!!
Riverdale Utah United States of America

A.S. Face 0258: Layne Muir

A.S. Face 0258: Layne Muir

Utah United States of America

A.S. Face 0257: Paul Forster

A.S. Face 0257: Paul Forster

My Name is Paul.  I am from Utah.  I was diagnosed January 2011.  I am very new to A.S. and find it very interesting to study how it affects us all so differently.  I consider myself lucky when I read some of the stories that have been posted here.  So far A.S. has not affected my life too much.  I was diagnosed with A.S. after about 20 different doctor visits in two weeks.  It started when I was on Christmas vacation with my wife at her parents house in Vegas.  I got out of the shower one morning and stepped out onto the floor mat and felt like I had twisted my ankle.  I didnt think too much of it at the time as I have twisted my ankle many times in my life playing basketball.   We still had two more days and didnt think too much of the ankle other than it made me limp a little from the slight pain.  As the days went on my lower back started to hurt.  This too wasnt anything too rare for my body as I have had back problems since I was a teenager, which looking back now, could have easily been signs of A.S. passed over by doctors, myself and family, because I had been diagnosed with slight scoliosis.  Any way back to Vegas… after a few more days of being on vacation we drove back to Utah a day early so I could rest my aching body and be ready to start work and school again.  We made it home late that night and unpacked and went to bed.  The next morning I got out of bed, my ankle still hurting, this time a lot worse.  I was able to make it down the hallway to the kitchen before my eyes went black and I had to quickly grab hold of a chair to avoid blacking out and hurting myself.  That morning the doctor visits started.  We went to the family doctor who examined me and took xrays.  He was unable to come to a conclusion as to what had happened and got me a boot/brace for my foot and told me to ice it and take some anti-inflammatories and see if it would get better.  I did as he prescribed.  A day went by and I started to notice a white build-up in my eye, didnt think too much of this either.  Another day went by and my eye started to get really irritated, red, itchy, and my vision started to go.  I believe this was new years eve.  We were able to get an appointment for an eye doctor, who after looking at me told me he couldnt help me and that my best bet was to go to the ER.  So we did.  I was lucky enough to get an ER doctor who knew enough about eyes and even had an ophthalmologist friend he could refer me to, because he believed I had iritis.  He called his friend and I was lucky enough the doctor was able to see me on New Years day.  I was seen by this doctor and as he was examining me and listening to my story he said “this isnt my area of expertise, but I would say you probably have Ankylosing Spondylitits”, I had no idea of what he spoke as this was the first I had ever heard of this disease.  He referred me to a rhuematologist.  I called the ones that he referred me to to get an appointment and they both had waiting times of up to six months.  I had a follow up appointment with my GP the following day and while I was there I told him what the eye doctor had said about A.S.  He concurred and referred me to another rhuematologist, this one he called himself and said I needed to get in right away.  I was able to get in within three days.  After a few more visits and tests, he diagnosed me with A.S. late in January.  My symptoms have luckily been pretty mild considering what I have heard from other stories, but still some days are just unbearable.  I currently am on a regimen of .5mL methotrexate injections twice a week and 500 mg naproxen daily.  This has been working for me so far.  I recently have found out that what apparently happened that morning in Vegas getting out of the shower was that I tore my tibial tendon in my left foot, which had been made weak due to the A.S.  The pain from this was just always assumed to come from the A.S. and since it has gone untreated for more than a year now, it has completely separated and deformed my foot.  I will be getting reconstruction surgery in May to correct it and am not looking forward to the recovery time.  However I am hopeful that after the recovery and with my A.S. in check I should be able to start exercising again.  I am looking forward to being able to run again.  I use to run 10-12 miles a week before the vegas vacation and havent been able to run since.  I am grateful that I have been able to find a rhuematologist that is understanding and works with me.  I am also very grateful for my supportive wife, who bless her heart had only been married to me for about 3 months when this all came down on us, not exactly something you want to start a marriage on.  But she has been wonderful.  I am very grateful to know that there are many out there that understand what we have to deal with on a daily basis because there are even more that have no idea.
Paul Forster
Utah United States of America