SPONDYLITISPLUS · really have not seen much improvement in your experience and that some of these...

SPONDYLITISSPONDYLITISPLULUSSPONDYLITISSPONDYLITISPLULUSWinter 2012

The Heart In AnkylosingSpondylitis

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Blood Work in Ankylosing Spondylitis:Diagnosis

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SPONDYLITIS ASSOCIATION OF AMERICA16360 Roscoe Blvd. Ste. 100Van Nuys, CA 91406Phone: (800) 777-8189Fax: (818) 892-1611email: [email protected]

SAA MISSIONTo be a leader in the quest to cureankylosing spondylitis and relateddiseases, and to empower those affected to live life to the fullest.

BOARD OF DIRECTORSCraig Gimbel, DDS, ChairCharlotte Howard, Vice ChairLeslie Kautz, CFA, TreasurerMichael Pianin, Esq., SecretaryEric Goldstein, CPA, MBADavid Hallegua, MDJohn D. Reveille, MDJames Rosenbaum, MDRandall SapadinKarrie Shogren, PhDRobert Ulrich, PharmDHilary Wilson, MBA

HONORARY BOARD MEMBERSRico BrognaHarry Bruckel, CPAJane Bruckel, BSN, RNVal HalamandarisMimi Kennedy

EXECUTIVE DIRECTORLaurie M. Savage

DIRECTOR OF ANNUAL GIVINGDiann Peterson, CFRE

DIRECTOR OF CORPORATE &FOUNDATION GIVINGRichard A. Howard, MBA

DIRECTOR OF PROGRAMSChris Miller

SPONDYLITISPLUSPublished four times a yearLaurie M. Savage, Editor-in-ChiefChris Miller, Managing Editor Einat Kfir, Graphic DesignDiann Peterson, EditorElin Aslanyan, ContributorPrinting by Sundance Press, Inc.

Annual subscriptions are free with SAAmembership. Content is forinformational purposes only. SAA doesnot endorse or recommend anymedications or products for spondylitis,and always advises that you seek thecounsel of a physician before initiatingany treatment for spondylitis.

Dear Readers,

As we think about the past year and how we have been impacted inspondyloarthritis (SpA), it would seem that the above quote gives much pause forthought.

So, where are we today compared to yesterday? Where are we going tomorrow?

The medical literature informs us that much more is known today in SpA comparedto just a few years ago. Published prevalence data from a Centers for DiseaseControl and Prevention national study, in part sponsored by the SAA, reports that2.7 million adults in the U.S. are affected by some form of SpA. Now, you may ask,how does that help? Well, there are multiple potential benefits to having thisinformation. One - now that higher prevalence numbers are known, it is more likelythat we’ll see new treatments developed specifically for SpA rather than having towait for the “trickle down” approval of drugs initially developed for other betterknown diseases like rheumatoid arthritis, for example. Other good news-advancements from the SAA-seeded TASC genetic study are leading to earlierdiagnosis and improved treatments. That said, some of you may remark that youreally have not seen much improvement in your experience and that some of theseadvances may not have helped you directly. True. We are aware of this and regretthe fact that these advancements did not come sooner. However, all of these newfindings suggest a brighter future for our younger generation, who may beimpacted. Indeed, recently an important study proposed that with early diagnosisand proper treatment, the disease process actually may be slowed or even stopped.

In the upcoming year, SAA is collaborating with the American College ofRheumatology to develop standardized treatment guidelines in spondyloarthritis. Inaddition, our research clinicians in North America, in collaboration with theVeterans’ Administration, will be completing phase one of the SAA-seeded andprivately funded Patient Registry to improve our understanding ofspondyloarthritis, the efficacy and side effects of treatments and the naturalprogression of the disease over time.

These are good things to celebrate. My team and I, plus all of our dedicatedvolunteers, wish each and every one of you optimum health and happiness in 2013.We celebrate all of us, serving all of you. Thank you for your support andconfidence in our work.

Sincerely,

Laurie M. SavageExecutive Director

“Give thy mind more to what thou has thanto what thou hast not”

-Marcus Aurelius Antoninus

ON POINT


Online News & A Laptop TipFirst, thanks so much for your recentarticle about Inflammatory Back Pain(IBP) [See editor’s note below]. I reallyappreciated learning about thedifferences between IBP andmechanical trouble. The IBP symptomsmatch my experience perfectly.

Secondly, I have a tip to share related toIBP to pass along to fellow members.

I stand up most of the time at my laptopinstead of sitting; however, a recentflare-up of inflammation around theneck vertebrae made looking down atthe monitor very painful. So, Ipurchased a second monitor that I haveon a stand at face-height, whichprevents having to look down at themonitor. This way, I still have thekeyboard at the right height for myelbows and wrists, while having asecond monitor straight ahead. I canstill use the laptop periodically when

seated and have the right height whenstanding. (Standing has always helpedto reduce other problems for me that Iexperience when sitting for too long.Varying standing and sitting is helpfulfor me—approximately 80% standingand 20% sitting during a regular day.)

Thanks very much,~SUSAN

Editor’s note: Thanks much for the tip,Susan, and for your kind words. TheIBP article Susan is referencing waspublished in our News Section online atspondylitis.org/press.

Compliments On TheSummer 2012 Issue“I meant to tell you all how amazing thelast Spondylitis Plus was. I think that’sthe best one yet! Love what you do andthank you so much for doing it!” ~DIANE (via Facebook)

“One of the best issues ever! Congrats!” ~MICHAEL (via Facebook)

Editor’s note: Glad you enjoyed theissue as well as the new look of ourNews Magazine. It sounds like we areon the right track. If you have questions,comments or a suggestion for an article,please email or mail using the contactinformation below. If you prefer, youcan also suggest topics on Facebook atfacebook.com/spondylitis or tweet us:@spondylitis

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CONTENTS

FEATURES ARTICLES

ALSO IN THIS ISSUE:

· 21 The Heart In Ankylosing Spondylitis

· 11 Blood Work in AnkylosingSpondylitis (AS): Diagnosis

· 13 Battling Fatigue

8 Faces of Ankylosing Spondylitis

11 Location, Location, Location: Entheseal T Cells Set Up Shop at the Intersection of IL-23 and

Spondyloarthritis

18 The Online Spondylitis Community: Are you a part of it?

LETTERS TO THE EDITORQuestion, comment or concern? We want tohear from you!

Please send letters to:[email protected] to the Editor/SAAP.O. Box 5872, Sherman Oaks, CA 91413

Please note that we reserve the right to editfor space and clarity.


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RESEARCH

Location,Location,Location:

Entheseal T CellsSet Up Shop atthe Intersection

of IL-23 andSpondyloarthritis

Fby Robert A. Colbert , MD, PhD Chief,Pediatric Translational Research BranchNIAMS/NIH/DHHS

OR DECADES , rheumato log i s t s have puzz led over why somepeop le deve lop a r th r i t i s i n the i r w r i s t s and f ingers , wh i le ino the r s i t a f fec t s p r imar i l y the sp ine and p laces where tendonsand l igaments a t tach to bones (known as en theses ) . Why doesar th r i t i s lead to severe bone and jo in t des t ruc t ion in some,wh i le in o the r s bone damage i s fo l lowed by over ly aggress ivebone fo rmat ion caus ing jo in t s and ve r tebra l bod ies to fuse?T h e s e d r a m a t i c d i f f e r e n c e s i n t h e a p p e a r a n c e o f d i s e a s e(phenotype) a re s t r i k ing when one compares spondy loar th r i t i s( SpA) , par t icu la r ly anky los ing spondy l i t i s (AS) , to rheumato idar th r i t i s (RA) .


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RESEARCH

n the last decade, there has been major progress indiscovering genes that predispose to arthritis. Almosttwo-dozen genes along with HLA-B27 have beenimplicated in susceptibility to AS, and for RA the listis even longer. Interestingly, there is virtually nooverlap between AS susceptibility genes and thoseimplicated in RA, while there is overlap between AS,psoriasis/psoriatic arthritis, and inflammatory boweldisease. This is not surprising since many individualswith AS also have psoriasis or inflammatory boweldisease. We say these diseases have overlappingclinical features or phenotype. Despite the remarkableadvances that the genetic revolution has produced, westill have problems navigating on the road from geneticpredisposition (genotype) to phenotype. We don’tfully understand how the predisposing genes worktogether to cause arthritis, and why the pattern ofarthritis is different in different people.

“In the last decade, therehas been major progress in

discover ing genes thatpredispose to arthr i t is .”

Animal models have taught us a great deal about howHLA-B27 might trigger inflammation as an early stepin the development of AS, and we are gaining a betterunderstanding of the cytokines that send instantmessages from cell to cell to direct the immuneresponse. One of the cytokines that has beenimplicated in AS is called interleukin-23 (IL-23). It isproduced in greater amounts by certain cells fromindividuals with AS, and in some studies has beenfound at increased levels in the blood. In rat cells,abnormally folded forms of HLA-B27 can generatecellular stress that has been linked to increasedproduction of IL-23, suggesting one way that HLA-B27 might contribute to disease. IL-23 exerts itsactions on cells that have a specific receptor (cleverlynamed the IL-23 receptor or IL23R), and naturalvariations in the IL23R gene have been associated withsusceptibility to AS, psoriasis, and inflammatorybowel disease. So this road appears to be well traveledin several forms of spondyloarthritis. However, howthis leads to the spondyloarthritis phenotype –enthesitis, spinal arthritis, and aberrant bone formation– remains unclear.

A recent study published in the journal NatureMedicine sheds light on this important question. Longrecognized as an important site for inflammation andrelated symptoms (pain, tenderness, and sometimesswelling), what happens at entheses may be the key tounderstanding the AS phenotype. The researchers whoperformed this study made two very importantobservations. The first was that simply raising thelevel of IL-23 in mice caused enthesitis includingspinal inflammation. Careful study of the enthesesunder the microscope at the earliest stage ofinflammation showed the expected inflammatory cellssuch as macrophages and neutrophils in and around theentheses, but not in the joint itself or the thin layer ofcells (synovium) that lines the joint. This is importantbecause other types of arthritis such as RA start withinflammation in the synovium.

Remarkably, inflammation caused by IL-23 wasfollowed shortly by new bone formation adjacent to theentheses. The second observation that was completelyunexpected was that there were special kinds of T cellssitting in the entheses waiting to be activated by IL-23.These T cells were discovered using a specialtechnique where the researchers genetically engineereda mouse so that every cell that could respond to IL-23turned green – actually fluorescent green – byexpressing what is called green fluorescent protein orGFP, attached to the IL-23 receptor. In this way, cellsthat express IL23R are also fluorescent green and easyto find with a special microscope. When theresearchers looked in the mouse, GFP-expressing cellswere found not only where immune responses arenormally generated, but also in peripheral and spinalentheses. The IL23R-green cells were present even inhealthy mice that had not been exposed to extra IL-23or any other agents that activate the immune system.Quite remarkably, they were also found in specificregions of the heart where the aorta comes out,suggesting that they might be involved in thedevelopment of aortic valve inflammation that occursin some individuals with spondyloarthritis and can leadto valve damage. When the GFP-expressing enthesealT cells were further examined they were found to makea number of inflammatory cytokines when treated withIL-23, including IL-17 and IL-22. IL-17 is well knownto mediate some of the pro-inflammatory effects of IL-23. Of even greater interest, they found that IL-22 was

I


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RESEARCH

important for promoting bone formation in and aroundthe entheses that followed on the heels ofinflammation.

These new findings have many implications and likemost good research studies, they raise additionalquestions. First, it has long been thought that theentheses and spine were affected in ankylosingspondylitis because of a different kind of T cell thatwould be aimed specifically at HLA-B27 as part of theadaptive or memory immune response. Results fromrats expressing HLA-B27 have caused this theory to bequestioned, and this new study confirms that the roadto enthesitis does not require immune recognition of

HLA-B27. Second, and more importantly to the manyindividuals who suffer from the symptoms of enthesitisalong the spine or in the extremities, this type ofinflammation might be treated by inhibiting IL-23.However, it is important to remember that many peoplealready benefit from biologics that target tumornecrosis factor (TNF), which could be part of thisinflammatory cascade. Thus it will be important tolearn in future studies whether blocking IL-23 isbeneficial in spondyloarthritis, and eventually whetherit is more effective than TNF blockade. This study alsoraises the possibility that targeting IL-22 will help slowthe progression of spinal disease and the boneformation that can eventually cause ankylosis. As a


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RESEARCH

pediatric rheumatologist I am often puzzled by theobservation that in children with spondyloarthritis,the hips and entheses in the legs and feet are affected,while the back and spine are often spared, at leastuntil later in the course of the disease. Consideringthese new findings, it is intriguing to speculate thatthe location of the entheseal T cells might changewith growth and development, which could accountfor the age-related differences in symptoms. Oneimportant question not addressed by this study iswhat causes the overproduction of IL-23? Moreover,since IL-23 has been implicated in a number ofinflammatory diseases, why aren’t enthesitis andspinal involvement more common? Perhaps theanswer is once again, location, location, location!Just like the entheseal T cells may be situated at thecrossroads of IL-23 and spondyloarthritis, perhapsthe biomechanical forces generated at enthesesprovide a stimulus for IL-23 production ingenetically susceptible individuals. Stay tuned.

Cytok ines Smal l prote in molecules such as in ter leukins or in ter ferons that are made andsecre ted by cel ls . Cytokines can ac t local ly or c i rcula te through the b lood andcommunicate messages to o ther ce l ls .

Enthes i s Area where t endons and l i gamen t s a t t ach to bone .

Enthes i t i s Inflammation of the entheses. Common sites of enthesitis in SpA include the pelvis,spine, heel, and knee.

Macrophage A type of whi te b lood ce l l tha t can inges t mater ia l inc luding bac ter ia , andproduce pro- inf lammatory cy tokines .

Neutrophi l A type o f wh i t e b lood ce l l , a l so known as a g ranu locy te , t ha t c i r cu la t e s i n theb loods t r eam and i s one o f t he f i r s t r e sponder s to t i s sue damage inc lud ingin fec t ion , and he lps to e l imina te invad ing o rgan i sms .

Synov ium A ce l lu l a r membrane loca ted be tween the jo in t capsu le and the jo in t cav i ty.

T Cel l s A type o f wh i t e b lood ce l l o r l ymphocy te tha t ma tu res in the thymus and cansec re t e cy tok ines and o the r med ia to r s o f t he immune r e sponse .

Glossary


Special Issue - Winter 20128

THE FACES OF AS

THE FACES of Ankylosing Spondylitis.

Excerpts from Kevin’s story -

“I am Kevin. I am 57 years oldand I live in England. Myproblems started about 50years ago at a time when evenless was known about thisdisease, and if you had painsthey were growing pains orimagination.”

“As you can see from my photosI am a classic case of AnkylosingSpondylitis. It’s not a pretty sightI know, but this is me. I can’tchange the way I look. I used totry to hide it - avoid mirrors andshop windows and refuse to havemy photo taken, but recentlyrealized, ‘What’s the point?

Everyone else can see me. Hiding from myself is notchanging the way I look to other people and is justmaking me miserable.”

“If I didn’t have Ankylosing Spondylitis I would not beme as I am now; my whole life would have beendifferent. I wouldn’t have my wonderful daughters andgrandchildren, I wouldn’t have met Joanne, my verysupportive wife, and I wouldn’t have met all thewonderful friends I have who, like me, have AnkylosingSpondylitis.”

An excerpt from Lisa’s story -

“At some point, I stood upstraight on the inside and Igot angry. I went off theprescription meds. I started tomake myself move and I tookevery step with determinationnot to let this disease win. Idid everything- changed diet,underwent sessions of prayer with many people, I startedto jog on the treadmill through the pain. I didn’t care. Ispoke to the pain like it was a robber who illegally cameto take my life, and I told it I was going to tell it what todo not the other way around. I knew I sounded like I hadlost it, but I didn’t I was aggressively responding to thisin the only way that worked for me.”

“My name is Jennifer Aiello. I live inMaryville, Tennessee. I wasdiagnosed with AS in April 2012.Today I am 47 years old and was inpain beginning in my teenage years.With many doctors and many mis-diagnosed theories, it was a case ofiritis that set the wheels in motion todo other tests. Finally, arheumatologist listened to me and took the necessarysteps to treat me. I have been on Sulfasalazine andHumira since April 2012, and on May 14th, I woke upfor the first time pain free! I continue to stretch and stayactive. But can’t help feeling deprived of many things formany years due to pain. Live on, starting now!”

Face # 1: Kevin Andrews

Face # 580: Jennifer Aiello

Faces of Ankylosing Spondylitis is a website dedicated entirely to the stories of those with AS. Asof this writing, over 590 stories have been published on the site, and more are being addedregularly. Men, women, and children from numerous countries and continents have shared theirstories and photos, and we would like to share a few excerpts here, with our gratitude to all. Youcan read all of the stories on the Faces of AS Site.

Face # 593: Lisa Russouw


www.stopas.org 9

THE FACES OF AS

The woman behind Faces of AS:SAA member, Cookie Hopper, ispictured here on the left, after herRemicade infusion.

The woman on the rightis Genie Hayward, whohas been Cookie’sinfusion nurse since herdiagnosis in 2002 and is,in Cookie’s words, “myrock and supporter inthis long journey”.

“Our goal is to haveONE THOUSANDfaces… There is strengthin numbers.” ~Cookie

“My name is Cookie Hopper, and I was diagnosed withAnkylosing Spondylitis in 2002. I started showingsymptoms around 1971 or so. I live in Texas with myhusband and daughter along with my grandchildren. Ispent most of my life feeling alone and very isolated; nothaving anyone who understood my disease made lifevery difficult. I found the Spondylitis Association ofAmerica in 2009.”

What inspired you to create Faces of AS?

“There was a time that my struggles with AnkylosingSpondylitis and other difficulties had brought me to thebrink of despair, and I had made the decision to take mylife. My husband’s intervention changed the course mylife would take.

A number of years later, I came across someone with ASwho was feeling the same way that I had about life; notlong after we learned that he had died. I remember howdesperate and alone I had felt, and didn’t want anyone toever feel that way. I wanted to do something to bringpeople with AS together on a personal and emotionallevel. I didn’t start Faces of Ankylosing Spondylitis toraise awareness, or funds; I didn’t start it to become ahealth activist, or even to find a cure for AS. I startedFaces of AS for that desperate frightened person in all ofus when we learn we have this disease.

I wasn’t sure how to do this and then one day a gentlemanfrom the UK named Kevin Andrews shared his pictureswith me, and I knew what had to be done. We had to showthe world the reality we deal with, and be honest about ourlives. So I decided to start asking people to share theirstories about their lives with AS. I never wanted anyone tofeel that the only hope they had was to take their life. Iwanted to show that with support from one another, we cannot only survive but thrive in our lives with AS. I wantedto do something that would make my life of pain andsuffering have meaning, I didn’t want it to be for nothing.

How do you feel about the project’s success so far?

“I am blown away by the reception that Faces of AS hasreceived and by the response of the spondylitiscommunity. We are almost at 600 stories at this time, andover a quarter of a million views on the site. It is soamazing and unbelievable to me. Each day, I am gratefulthat people were willing to come together and bare theirsouls to make a difference for others. For me personally,the true triumph is when people tell me that they aregetting together and meeting each other. That they knowthat from this day forward when times are unbearable theyonly have to reach out to one of the others on this site, andthey will have the emotional support that is needed tosurvive this disease; they know they are not a supportgroup but a family.

Where do you see Faces of AS going? Any future plans ordreams for the project you’d like to share?

”I am hoping that one day each of the AnkylosingSpondylitis Societies across the world will include a linkto the Faces of AS on their site, to make it global andbring us together to work toward finding a cure. I am alsohoping that in the future I will be able to set up a fund thatwill help people with their personal and medical needs.Those are my ultimate goals for Faces.”

~ You can find Faces of AS on SAA’s website at:Spondylitis.org/faces

“It was important for me to do this, not formyself, but for each one of the Faces on thissite and those who are still unknown.” ~Cookie *Cookie Hopper is Face # 62. We chose not to truncateher story to allow for printing here, but rather invite youto visit the website, and read her story in full.

Faces of Ankylosing Spondylitis:http://thefacesofankylosingspondylitis.com


S.M.A.R.T.

To sign up for the S.M.A.R.T. Givers Program, go to

www.spondylitis.org/smart or contact

Helene Hart at 800-777-8189, ext. 229 • or at [email protected]

S.M.A.R.T. is a safe, secure and convenient way to put more of your moneyto work advancing the spondylitis community’s shared mission. Just specify amonthly amount and SAA will automatically deduct the contribution fromyour credit or debit card. At the end of the year, we’ll send you a summaryof your giving and a tax receipt. Your dependable monthly gift of $100, $50,$25, $15 or even $10 will boost the impact of your SAA membership gift manytimes over.

Sign up today and get a free gift. Holding 14 ounces of yourfavorite beverage, this heavy, oversized mug features a largeear shaped handle and boasts the SAA logo on each side. Agreat way to get the word out about a cause that’s close toyour heart!


www.stopas.org

Q: Can you describe the following blood tests and whatthey look for? Also, how do they relate to the diagnosisof AS?

ESR - erythrocyte sedimentation rate: this is a blood testfor inflammation. Unfortunately, it is not high in all ASpatients and even when it is high, it can be from othercauses. Other causes of an elevation in the ESR includeanemia, infection and cancer. That is not to say that if youhave an elevation in your ESR in AS, you need to worryabout infection or cancer.

How the test works: as the test implies, we calculate therate of sedimentation of the red blood cell (or how fast itfalls in a test tube). If there is a lot of inflammation, thereis often a molecule called fibrinogen and this makes thered blood cells fall faster thereby increasing the rate!

One more pearl about the ESR: it goes up normally as weage and in women. Therefore I would not use the quotedcommon reference range of 0 to 10 or 15mm/hr. There isa rule of thumb you can use to approximatewhat is an acceptable ESR for age andgender. Age (+10 for a woman)/2. Inother words, a 40 year old womanshould not have an ESR > 25mm/hr.

CRP - C-reactive protein: this is anotherblood marker of inflammation. Differentlaboratories use different tests and differentreference ranges so don’t worry if the numberchanges a lot from lab to lab. Look at thereference range. Also remember other causes ofan elevation in the CRP include infection and the highsensitive CRP has been associated with cardiovasculardisease.

Many researchers believe the CRP may be better thanthe ESR in AS. My experience is that sometimes one iselevated and not the other (without clear predictability),sometimes both and often neither. I generally follow bothas a measure for disease activity in patients.

HLA-B27- this is a genetic test. In other words, it doesn’t

change over time and youcannot become positive.In general, once it istested, it should not needto be retested. HLA-B27is positive in 80-90% ofAS patients. This isespecially true incaucasians and less true insome other ethnic groups,especially AfricanAmericans. It is oftenordered in the diagnosticstage of disease and may help your doctor decide whetherthe probability of AS is higher or lower. It is not adiagnostic test however for 2 reasons. 1) Not everyonewith AS has the gene (though most people do). 2) In theUnited States population, 7.5% of white people carry thegene, yet less than 5% of them develop AS. It is lower inother ethnic groups, except in some Native Americanpatients, when it can be much higher.

11

Blood Work in Ankylosing Spondylitis: DIAGNOSIS

Questions for Dr. Lianne Gensler

BLOOD WORK



BLOOD WORK

Other HLA B27 pearls: • AS rarely recurs in families in the absence of HLA-B27• If you have AS and are HLA-B27 positive, the

probability that your child develops AS is 20%• If you don’t have HLA-B27, the age at onset of disease

appears to be 10 years later

Q: What are rheumatoid factor and antinuclearantibodies? Do these have any association with AS?

Neither of these tests are associated with AS and shouldnot be ordered if the provider is thinking about AS onlyand not rheumatoid arthritis or connective tissue disease.In general these diseases do not co-exist. RheumatoidFactor (RF) is an antibody test found in RheumatoidArthritis, but also in other diseases (both rheumatologic(i.e. Sjogren’s syndrome) and non-rheumatologic (i.e.Hepatitis C) diseases). The Anti-nuclear antibody (ANA)is an antibody test seen in lupus, but also in otherrheumatologic (i.e. Systemic sclerosis) and non-rheumatologic (autoimmune thyroiditis) diseases. Neitherof these tests are expected to be positive in AS.Unfortunately, there are a lot of providers that do notunderstand the differences and order a panel ofrheumatologic tests that may include all of the above.There are also labs that allow for “panels” of tests to bedone. In the future, we are moving towards better qualityhealthcare including appropriate laboratory testing.

Q: Are there any other blood tests that may be used tohelp diagnose AS or that you personally have felthelpful in diagnosis?

No (not yet).

Q: In Dr. Muhammad Asim Khan’s book, “AnkylosingSpondylitis: The Facts”, he states that, “...less than70% of people with AS have a raised ESR value, evenwhen there is active inflammation.” Can you brieflydiscuss why this may be?

It is not clear why AS patients don’t always have as muchinflammation in the blood as those with diseases likerheumatoid arthritis do. One reason may be that theinflammation is local to the sacroiliac joints and spine andtherefore the blood measurement is not picking up thismore remote process.

Q: Is there any one blood test that can definitivelydiagnose AS on its own? (Note: We have had numerousmembers contact us under the assumption that theHLA-B27 test is actually diagnostic).

No. There is no one blood test that gives a diagnosis of ASto a patient. The diagnosis is made based on severalfactors:1. A history of inflammatory back/buttock pain2. In late AS, the physical examination may be helpful,

but early in disease it often is not 3. Elevation in the ESR and /or CRP If the HLA-B27 is

positive. Keep in mind the points above about this test 4. X-ray or MRI if the x-ray is negative

This does not mean you need all of these features, but yourdoctor will take these “pieces of the puzzle” and usesomething called “clinical reasoning” to decide whetheryou do or do not have AS.

Lianne Gensler is the Director of theAnkylosing Spondylitis Clinic at UCSF inSan Francisco, CA. She is an AssistantProfessor of Medicine in the division ofRheumatology and sees patients inaddition to teaching and performingresearch in Spondyloarthritis.


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FATIGUE

ne of the most common - yet impactful - complicationsof ankylosing spondylitis (AS) is fatigue. As detailed

in SAA’s book, “Straight Talk On Spondylitis” fatigue canbe caused by many things related to spondylitis such as lossof sleep because of physical discomfort. But it can also be aby-product of the disease itself.

Spondylitis causes inflammation. When inflammation ispresent, your body must use energy to deal with it. Therelease of cytokines during the process of inflammation canproduce the sensation of fatigue as well as mild to moderateanemia. Anemia may also contribute to a feeling of tiredness.Treating the inflammation caused by ankylosing spondylitiscan assist in decreasing fatigue and anemia.

A study examining fatigue in AS and published in the journalMusculoskeletal Care states that in those who participated inthe study, “Fatigue impacted on social life, relationships andwork.” The authors of the study concluded that, “Futurepractice should include a comprehensive fatigue assessmentand the development of treatment programmes” to help thoseaffected self-manage their fatigue.

Speaking with your physician / rheumatologist is a first stepin order to find the exact cause of the fatigue (e.g. lack ofsleep, inflammation, anemia, another cause or acombination thereof). That said, most medications used forAS are aimed at helping with inflammation includingNSAIDs (non steroidal anti-inflammatories) and the TNF-aInhibitor / biologic medications. Proper exercise can alsohelp with fatigue. In the case of anemia, where the bodydoes not produce enough red blood cells, certain dietchanges such as supplements may also be helpful.

As the study points out, “fatigue has a negative impact onquality of life in people with AS.”

References:Fatigue in Ankylosing Spondylitis: Causes, Consequencesand Self-Management; Wendy Farren MSc1,*, LynneGoodacre PhD2, Mark Stigant PhD3 - Article firstpublished online: 24 JUL 2012 - DOI: 10.1002/msc.1029Straight Talk On Spondylitis; Spondylitis Association ofAmerica - © Copyright 2008

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FATIGUE

“Some days it feels like wanting to blend intothe sofa, so that none of my family memberswill notice that I am there and ask or expect meto do anything.”

—Christie, Huntington Beach, CA

“I liken it to wearing a jacket containing 40pound weights in each pocket, while sloggingthrough a vat of molasses with suction cupsglued to the bottom of your shoes.”

—Michael

“No amount of sleep will reduce the fatiguethat makes me feel like I’m walking around allday with one of those lead aprons that they useat the dentist’s office for x-ray protection. Itfeels like when you experienced a BAD caseof the flu - pre AS.”

— Tim

“I lie in bed at night and will myself to movebecause it hurts so much to actually do it. Inaddition, when I “wake up” in the morning, if Iactually managed to get some sleep, I feel like Ihaven’t even been in bed. It’s such anoverwhelming sense of exhaustion. Arms andlegs feel like lead - and there is a sense of failure- even though you know this is not the case.”

— Crystal

“Oh how I can relate. It was great though tofind a doctor who really gets it and doesn’twant to blame all my symptoms ondepression!”

—Kristy

“Fatigue is definitely an issue. Last summer Ihad Fifth Disease and felt extremely cruddyand fatigued for a couple of months. Fifth andAS is not a good combination. That was scarybecause it took a long time to find out that therewas a light at the end of that lethargic tunnel.”

—Richard

?HOW DOES FATIGUE FEEL

Overheard On Facebook & SAA’s

Forums...


www.stopas.org 15

FATIGUE & EXERCISE

atigue can affect all of us. I’ve gotthree children, ages 9, 6 & 3, a businesswith 5 locations and have AS. I cantotally empathize. As physicaltherapists we work with conditioning,as well as strength, flexibility,proprioception, etc. And conditioningcan go a long way toward decreasingfatigue in the long run.

In normal cardiovascular training orconditioning, a rule of thumb is toascertain the individual’s capacity forexercise, either their true capacitythrough a Bruce Protocol or somesimilar test, or their theoreticalmaximum heart rate and then shoot for 60%-80% of thatmaximum. A generally accepted formula for the theoreticalmaximum heart rate, though not as accurate as we wouldlike1, is Max HR=220-age. Then estimate 60% of that as atarget for training and conditioning. (40 year old person’starget for exercise: 220-40*.6=108 beats per minute (bpm))So ideally, a 40 year old person would engage in an activitythat caused their heart rate to exceed 108 bpm, but not gotoo much beyond that for safety purposes. Of course, you’llneed to be able to check your heart rate. Here is a quick howto guide: http://www.wikihow.com/Check-Your-Pulse.

The key here is consistency. Consistency matters muchmore than intensity. And by consistency, I mean doingsomething 3-4 times each week for at least 10-20 minutes.Ideally it would be every day. It can be as simple as walkingto lunch or as involved as going to the pool. It can even bebroken up throughout the day, such as parking at the far endof the lot, taking the stairs (if they don’t hurt), sitting down& standing up 10-20 times in a row. Short bouts of exercisehave been shown to result in improved aerobic capacity.2

An example I use in talks for SAA is brushing your teeth.You wouldn’t expect to brush and floss for 45 minutes onSaturday and have everything be okay. Exercise is the sameway – it takes a little bit every day, consistently, over time,to see an effect.

With AS or related conditions, theproblem becomes a bit morecomplicated. How do you change yourlevel of conditioning, and thus yourfatigue state, when movement andactivity hurts? A big key is finding

something that doesn’t hurt, or at least doesn’t leave you inpain or debilitated for days after activity. Really, anymovement can help to elevate your heart rate. Below are afew ideas for activities. You will have to experiment and trydifferent things to find activities that don’t aggravate you toomuch or cause your condition to flare up. And be patient.Normal training effect, in other words, when you start to seeresults, takes at least 6-8 weeks. So be consistent, startmoving a little more, and you’ll start feeling better and havemore energy in a few weeks.

Possible Activities: Walking, Cycling, Swimming, Jogging,Stationary Bike, Stairs, Ping Pong, Volleyball, Fencing,Skating, Golf, Squash, Weight Lifting, Equestrian, FrisbeeGolf, Turkish Oil Wrestling, Water Skiing, Sailing, WaterPolo, Underwater Hockey, Snorkeling, Unicycling,Basically anything that moves you and gets you moving!

Sturdy McKee, MPT is a physical therapist and is Co-founder and CEO of San Francisco Sport and SpinePhysical Therapy.

1Robergs, R.A., Landwehr, R. THE SURPRISINGHISTORY OF THE “HRmax=220-age” EQUATION.Journal of Exercise Physiology 2002; 2:1-10

2Woolf-May, K., et al. The efficacy of accumulated shortbouts versus single daily bouts of brisk walking inimproving aerobic fitness and blood lipid profiles. HealthEducation Research 1998; 14, 6:803-815

&FFATIGUE

The key here isconsistency.

Consistency mattersmuch more than

intensity.

EXERCISE


16

MEMBERSHIP

▲ ▲


Research. Education. Awareness. These three words arethe pillars that support the Spondylitis Association’smission to change the landscape of spondyloarthritis inNorth America for the better.

And as all of you who have joined us in embracing thatmission know, they are far more than simple words.Words alone will not change the world. But words can,and do, inspire the actions that can transform it.

It is the actions of SAA members like you that trulysupport the mission and provide the catalyst that keeps usmoving closer to our shared goals. Whether it beparticipating in medical research studies, distributingeducational materials to the public and your local medicalcommunity, spreading awareness through social mediaand other avenues or providing the financial resourcesnecessary to make a difference in a field that is criticallyunderfunded — all of us at SAA are grateful for yourongoing commitment to effecting the changes we all wantto see.

Those efforts are paying off. Those who are newlydiagnosed today face a far different path than those ofgenerations past. And, with continued hard work anddetermination, the future is bright. Here are a few of theimportant projects your ongoing support has madepossible.

RESEARCH: Spondylitis Patient Registry

A patient registry is a database - a compilation of data onpeople with AS. In this case, the registry will be acompilation of three existing patient databases that have beenused in ankylosing spondylitis research. By consolidatingthese, we will build a new database that can look at thousandsand potentially tens of thousands of patients with AS and seehealth trends, disease severity over time, age, genderdifferences (or lack thereof), race, complications and much,much more.

RESEARCH: SAA’s Screening Tool for AnkylosingSpondylitis

Early diagnosis is the key to more positive disease outcome.If the disease is diagnosed before serious damage occurs,

patients can avail themselves of appropriate treatments andexercise and thereby ensure better quality of life. Since welaunched the screening tool at www.backpaintest.org in July2010, more than 28,000 people have taken the test so thosewith a likelihood of spondylitis can seek appropriate care.

EDUCATION: SAA’s Patient Self-Management Tool forSpondylitis

Now in development with CeNRG, we are creating theworld’s first cross-platform application / website that willallow people with spondylitis to track, via graphic overlay,their symptoms, their medications, their medical team andappointment schedule and receive information on spondylitisthrough the application and SAA website. All of this will beaccessible through a smart phone (iPhone or Android) orhome computer (PC or Mac).

▲

Research Education Awareness

▲


www.stopas.org 17

EDUCATION: “Ankylosing Spondylitis: ManagingPatients in an Emergency Setting, A Primer for FirstResponders

SAA’s groundbreaking educational program provides thetraining to ensure that all emergency first responders,including emergency medical technicians, paramedics andfire and police safety personnel have an opportunity to learnthe proper and safe techniques in the care and handling ofindividuals with spondylitis. This comprehensive DVDresource prepares an emergency medical technician to do theright thing to prevent further injury.

EDUCATION: Publications

For a newly diagnosed person, resources andsupport are critical. SAA has compiled acomprehensive collection of resources to address theconcerns of this portion of our community. TheAction Plan to Manage Spondylitis has beendownloaded more than 17,000 times by those eagerto learn more about living with spondylitis. Fromadvice on choosing a rheumatologist to knowingyour medications to exercise programs to tips andtricks for getting the most out of life in spite ofspondylitis, this one-stop action plan is essential foranyone new to the challenge.

AWARENESS: PSA Campaign

SAA set in motion the most comprehensivespondylitis awareness campaign ever undertaken inthe U.S. Public Service Announcements arecurrently airing on hundreds of television and radiostations throughout the country in order to raise theprofile of this group of under-known diseases.

AWARENESS: SAA on Capitol Hill

By working with partners such as the NIH’s NationalInstitute of Arthritis and Musculoskeletal and SkinDisease (NIAMS) Coalition, The American Collegeof Rheumatology and the National Health Council,among others, SAA seeks to promote earlierdiagnosis and treatment; promote public awarenessand education; improve access to appropriate qualityhealth care and medications; increase federal

funding and affect public policy that impacts the lives ofspondyloarthritis patients.

The above is just a small sampling of the important advancesmade possible by the actions of committed SAA patrons likeyou. Together, and with your renewed support, the strideswe can make in advancing Research, Education andAwareness in the field of spondyloarthritis can truly changethe world for the better.

▲▲

MEMBERSHIP


A glimpse inside

- Facebook.com/spondylitisOn Facebook Janice discusses her new treadmilldesk.

“I got tired of being stiff in the morning and then sitting all dayat my desk. So, my husband made a treadmill desk for me. I’mloving it and feeling a lot better physically.”

Also on Facebook SAA asked,“On days when you’ve done all you can but the pain is stillthere, can anything help take your mind off the pain? How doyou cope?”

And over 50 of our friends responded. Here are a few ofthe posts.

“Being in the company of someone who understandsis helpful.”

“Usually I try to do some stretching and massage the jointgently. Also, I apply either heat or cold depending on whetherthere’s swelling. Curling up with a good book is a greatdistraction and meditation helps to relax me.”

“Lots of prayer, rest and good thoughts. And maybe a stiffdrink later on.”

“Acupuncture, tea, exercise, watching a movie, Epsom salts,get out of my ‘head’ activities.”

“Meditation ...if all else fails Bourbon.”

“Painting. Anything creative helps take you out of the pain,and lying on my trusty heating pad and watching a funnymovie. I try to keep the Lush Bath Bombs on hand so if I havea bad time of it, soaking in the tub with one of these treatsalways makes me feel better!”

- Twitter.com/spondylitis, (@Spondylitis)

Elsewhere on Twitter SAA shares information onnew spondylitis research, news stories, upcoming events, andmore. Other spondylitis patients find us, and one another,through the ‘#spondylitis’ and ‘#followspondy’ hashtags andmake connections regularly. We’ll be glad to introduce you toeveryone if you find us and say hello.

SAA tweets, “Spondylitis Fun Fact ~ Did you know there wasa dinosaur called Ankylosaurus?! YUP The word means“fused lizard” lizard" in Greek!”

@ThePositivePear shares, “#Ankylosing #Spondylitis#trivia Did u know: 1st evidence of AS was uncovered inskeletal remains of 5000-year–old Egyptian mummy?”

Forums.spondylitis.org

And of course there is our original spondylitis social network,the SAA Message Boards. Open discussions go on every day on 15different boards organized by various topics.Discussions on medications, exercise tips,relationship concerns, daily livingissues, alternative treatments, aswell as quirky fun topics &anecdotes are just some examples ofpopular discussion topics. Be sure to stop by and say hello!

On the general message board ‘Dobeigh’ writes,

“I wanted to thank you guys on the forum. Without you guyshelping me with all my questions, I would not have knownwhere to go and what to ask for… I cannot believe I found acommunity like this on the internet. This place is a veryspecial place.”

We hope you will decide to visit our online communities! Youmight find a great new network of support and information.


A myriad of ideas & topics are discussed, tips are shared, and questions are posed to thecommunity every day on SAA’s social networks. If you haven’t been active in this community,we invite you to take a look!

The Online Spondylitis Community:ARE YOU A PART OF IT?

ONLINE SPONDYLITIS COMMUNITY


www.stopas.org 19

SUPPORT GROUPS

Each SAA sponsored support group is a collaborationbetween our programs department, the volunteer supportgroup leader, and the group members. Our groups not onlycreate supportive spondylitis communities inneighborhoods across the country, but also utilize SAA’seducational resources to empower group members to takean active role in managing spondylitis. Meeting topics arebased on the group’s interests and vary from daily livingissues – such as fatigue, work place accommodations, andemotional effects of spondylitis, to discussions onalternative treatments, exercise, nutrition, medications, andmuch more.

Whether you are newly diagnosed or a spondylitis veteran,we invite you to drop in for a meeting. If you are interestedin starting a group near you, Elin Aslanyan at SAA wouldbe happy to provide more information.

A special Thank You to our committed, passionate supportgroup leaders who unselfishly give so much of themselves,volunteering their time and energy to help those aroundthem.

Recent meeting highlights include:

Oakland, CA

When: Sunday, September 16, 2012

Topic: Anti-Inflammatory Diets and Spondylitis

Speaker: Jennifer Lanett, DC

Tucson, AZ

When: Thursday, September 6, 2012

Topic: Using massage to help reduce inflammation and promote good health

Speaker: Shiela Harvey

Boise, ID

When: Saturday, August 25, 2012

Special Event: BBQ Picnic

Dallas, TX

When: Monday, August 13, 2012

Topic: Social Security Disability - filing, how decisionprocess works, and Q & A

Speaker: Sandra Cook, Attorney at Law

What is an “SAA Sponsored Spondylitis Educational Support Group” and what can you expect at a meeting?



CORPORATE PARTNERSThe Corporate Partnership Program provides a way for the Spondylitis

Association’s pharmaceutical partners to positively impact the lives of thoseaffected by spondylitis by contributing to the organization’s general operatingbudget. SAA also receives additional corporate support for special programs.

PLATINUM PARTNER

GOLD PARTNER

BRONZE PARTNER


www.stopas.org 21

RESEARCH

In addition to well-known extra-articular manifestations, ankylosingspondylitis (AS) has been reported to be associated with a number ofcardiovascular diseases, including aortitis, aortic valve disease,conduction disturbances, cardiomyopathy, and ischemic heart disease.

n the 1930s, a study found aortitis (inflammation ofthe aorta) in a group of patients with AS. Since then, anumber of cardiovascular diseases have been linked toAS, many of which begin prior to the onset of clinicalsymptoms.

“Cardiac issues are found in an estimated 2 percent to 10percent of people with AS.”

A range of cardiovascular diseases Among the most common cardiac problems faced by ASpatients are:

Aortitis – inflammation of the aorta, the large artery thattakes blood from the heart and distributes it to the rest ofthe body. Aortitis can result in aortic insufficiency, or theinability of the aorta to carry sufficient amounts of bloodto the body, and hypertension (high blood pressure). A

number of people with AS have chronic inflammation atthe base of the heart, around the aortic valve and theorigin of the aorta. Years of chronic inflammation canlead to valve leakage, which sometimes requires surgicalintervention. Management of aortitis includes controllingthe inflammation with medications, treatingcomplications, and preventing its recurrence.

Aortic valve disease – a condition in which the valvebetween the heart’s main pumping chamber (leftventricle) and the aorta does not work properly. There aretwo main types of aortic valve disease—aortic stenosis(narrowing of the aortic valve opening) and aorticregurgitation, in which the aortic valve does not closeproperly, causing blood to flow backward into the leftventricle. This condition, which can cause shortness ofbreath, chest pain (angina) and dizziness, is often treatedwith surgery to repair or replace the faulty valve.

I



RESEARCH

Conduction disturbances –arrhythmias that cause the heartto beat too fast (tachycardia) or too slow (bradycardia) and topump blood less efficiently. The disturbances are caused eitherby a disruption of the heart’s normal electrical conductionsystem or by heart disease. People with conductiondisturbances often feel a palpitation or skipped heart beat anda fluttering sensation in the chest and neck, as well as fatigue,dizziness, lightheadedness, shortness of breath, and chest pain.In extreme cases, conduction disturbances can cause suddencardiac arrest. Arrhythmias are treated with medication,ablation (radiofrequency energy delivered at the site of theelectrical disturbance), defibrillation (an electronic shock tothe heart), or with an implantable cardioverter defibrillator (apacemaker-like device that delivers a shock to the heart torestore normal rhythm).

Cardiomyopathy – a disease that enlarges and weakens theheart muscle, making it harder for the heart to pump blood tothe rest of the body. Left untreated, cardiomyopathy can leadto heart failure, blood clots, valve problems, and cardiacarrest. The symptoms of cardiomyopathy include shortnessof breath with exertion or even at rest, swelling of the legs,ankles and feet, abdominal bloating, fatigue, and an irregularheartbeat. Most often, cardiomyopathy is treated bymanaging symptoms, preventing the condition fromworsening, and reducing the risk for complications.Medications like ACE inhibitors (a type of blood pressuremedication) can help improve the heart’s pumpingcapabilities, and beta blockers can help improve heartfunction as well. Some patients receive a pacemaker tocoordinate contractions between the left and right ventriclesor a ventricular assist device to keep blood circulatingthrough the heart.

Ischemic heart disease – a disease characterized by reducedblood supply to the heart muscle, usually due to coronaryartery disease. People with ischemic heart disease, also calledatherosclerosis, often have angina, chest pressure, decreasedtolerance for exercise, and difficulty breathing; many peoplemistake these symptoms for heartburn. Treatment includesanti-angina medications (nitroglycerin), medications to lowerblood pressure and blood cholesterol, angioplasty with stentplacement, and coronary bypass surgery.

Many people with AS also suffer from a condition calledcostochondritis, which can mimic the chest pain caused byan acute heart attack. Costochondritis is a benign

inflammation of the cartilage connecting the ribs to thebreastbone. The pain can often be excruciating, especiallyafter exercise or coughing. The pain usually goes away on itsown; however, in certain cases, it can last for several monthsor longer. Treatment focuses on pain relief, with prescriptionnonsteroidal anti-inflammatories like ibuprofen or naproxenor narcotics (Vicodin, Percocet) if the pain is severe. Inaddition, antidepressants (amitriptyline) and the epilepsydrug gabapentin (Neurontin) have proven successful intreating chronic pain. Stretching exercises, nerve stimulation,and injections of numbing medications can also help controlthe pain of costochondritis.

In 2011, Canadian researchers found that AS increases the riskof heart disease and stroke by as much as 25 percent to 60percent. The increase was greatest for people with AS betweenthe ages of 20 and 39. Compared to the non-AS population, thestudy found that AS patients had a 58 percent higher risk ofvalvular heart disease, a 37 percent higher risk of ischemicheart disease, a 25 percent higher risk of stroke. Theresearchers say the link between AS and heart disease existsfor a number of reasons, including the chronic inflammationassociated with AS, the use of NSAIDs, and a tendency toexercise less than the general population due to pain.

NSAIDs and the heartNonsteroidal anti-inflammatory drugs (NSAIDs) are themost commonly used class of medications to treat the painand stiffness associated with AS. Sometimes, higher doses ofNSAIDs are needed to maintain relief from AS symptoms.This can pose a problem because long-term NSAID use cancause significant side effects, especially in thegastrointestinal tract. A different class of NSAIDs, known asCox-2 inhibitors (or Coxibs), allegedly reduce the risk ofgastrointestinal complications associated with traditionalNSAID therapy.

But now, research is showing that prescription-strengthNSAIDs also carry significant risks of cardiovascular events.In a study published in the British Medical Journal in 2011,researchers found that NSAIDs significantly increase the riskof cardiovascular events in people who take thesemedications on a regular basis. In fact, long-term users ofprescription NSAIDs have a two-fold to four-fold increase inthe risk of heart attack, stroke or cardiovascular death.

The researchers looked at 31 studies with more than 116,000patients who took prescription-strength NSAIDs andcompared the NSAIDs with other NSAIDS or a placebo.They found that ibuprofen (Advil) carries the highest risk ofstroke, etoricoxib (which is not sold in the U.S.) carries thehighest risk of cardiovascular death, and rofecoxib (Vioxx,

{ }“Cardiac issues are found in anestimated 2 percent to 10

percent of people with AS.”


www.stopas.org 23

RESEARCH

“AS increases the risk of heartdisease and stroke by as muchas 25 percent to 60 percent.”{

which was withdrawn from the market) has the highest riskof heart attack. They found that naproxen (Aleve) is thesafest of the NSAIDs, but that it still carries somecardiovascular risk.

For years, doctors have exercised caution when prescribingNSAIDs for chronic pain relief because of their well-knownrisk for causing ulcers and serious bleeding in the stomachand GI tract. After a study found that Vioxx, a Cox-2inhibitor, carried a significant increase in the risk of heartattack and stroke, doctors began to wonder if other pain-relieving medications had heart risks, as well. By the timeMerck withdrew Vioxx from the market in September 2004,the drug had caused a reported 60,000 deaths worldwide.

A study published in the Archives of Internal Medicine in2010 found that people taking opioid drugs, which have longbeen used to treat pain, also have an elevated risk of heartattack compared to NSAIDs. Many clinicians, however,think that NSAID gels and patches may relieve pain withoutthe adverse abdominal and heart effects that pills cause.Others say to simply use NSAIDs judiciously.

So what is an AS patient, who relies on NSAIDs forsymptom relief, to do? The best advice is to talk to yourdoctor about the risks and benefits of NSAIDs and todisclose any pre-existing heart conditions or risk that youalready have.

An ounce of preventionStudies show that nearly everyone—including people withAS—can become more heart healthy by following a few keysteps such as eating a healthful diet, exercising regularly,quitting smoking, and maintaining a healthy body weight.The National Institutes of Health says you should also knowyour blood pressure, cholesterol and triglyceride levels andkeep them under control. Making healthy choices andmanaging any medical conditions you have, including yourAS, can help keep your heart healthy.

Tumor necrosis factor-alpha (TNF) blockers are biologicmedications that have shown great promise in treating thespinal arthritis associated with AS. A 2009 study in thejournal Arthritis and Rheumatism discovered a side benefitof TNF blockers. Etanercept (Enbrel) improves the lipidprofile (cholesterol and triglycerides) in AS patients and,

therefore, may protect against atherosclerosis. Other studieshave shown that anti-TNF medications can improve theaortic stiffness that people with AS often suffer.

People with aggressive AS should be screened with aphysical exam yearly, if not an echocardiogram (a diagnostictest that may show abnormalities such as valve dysfunctionor damage to heart tissue), to rule out any issues affecting theheart. If problems aren’t detected, they can’t be treated.

When it comes to AS and cardiovascular disease, thebottom-line is simple: take care of yourself, pay attention toyour symptoms and manage them accordingly, and speakwith a health-care professional if you have questions orconcerns about your condition or your treatment, or yourrisk for cardiovascular disease.

Story by Scott P. Edwards - Scott P. Edwards is afreelance health and medical writer based in Holliston,Mass. He has written for Harvard Medical School, Dana-Farber Cancer Institute, the Salk Institute for BiologicalStudies, and Nature Publishing Group.

Special thanks to Dr. David Hallegua for assisting with thisarticle. Dr. Hallegua is a rheumatologist specializing inClinical Research, Patient Care and Teaching in LosAngeles, California. He is affiliated with Cedars-SinaiMedical Center and is an Assistant Clinical Professor forthe David Geffen School of Medicine at UCLA. Dr.Hallegua is a member of SAA's Board of Directors.

}


On February 12 of this year, SAA held a specialfundraiser, “The Best Medicine: A Night ofcomedy to Benefit the Spondylitis Associationof America” at the Comic Strip Live in NewYork, NY. Performers included WilsonMcDermut, Bill McCarty, Michael King, ReginaDeCicco, D. F. Sweedler and Michael Rakosi.

Thanks to your generous support, the eventgrossed over $17,000 that will be put to workimproving the lives of spondylitis patients andtheir families.

We’d like to give special thanks to Michael Smith(spondyville.com) and Michael Rakosi for makingthe show happen.

We’d also like to thank yacht owner Alan B. Hirshfor donating a 3-hour cruise during an auction atthe event as well as SAA Board Chair CraigGimbel, DDS for his in kind donation.

All Photos by Barbara Alper


New York Comedy Club

FUNDRAISING & AWARENESS


www.stopas.org 25

FUNDRAISING & AWARENESS


Medical and ScientificAdvisory Board

Chair:James Rosenbaum, MD . . . . . . . . . . . . . . . . . . .Portland, OR

Daniel Clegg, MD . . . . . . . . . . . . . . . . . .Salt Lake City, UTRobert Colbert, MD, PhD . . . . . . . . . . . . . . . . .Bethesda, MDAtul Deodhar, MD . . . . . . . . . . . . . . . . . . . . . . .Portland, ORNortin Hadler, MD . . . . . . . . . . . . . . . . . . . .Chapel Hill, NCRobert Inman, MD . . . . . . . . . . . . . . . . . . . . . . .Toronto, ONMuhammad Asim Khan, MD . . . . . . . . . . . . .Cleveland, OHAllan Metzger, MD . . . . . . . . . . . . . . . . . . .Los Angeles, CADavid H. Neustadt, MD . . . . . . . . . . . . . . . . .Louisville, KYJoel Taurog, MD . . . . . . . . . . . . . . . . . . . . . . . . . Dallas, TXRuben Burgos Vargas, MD . . . . . . . . . . . . .Mexico City, MXRobert Warren, MD, PhD . . . . . . . . . . . . . . . . . Houston, TXMichael Weisman, MD . . . . . . . . . . . . . . . .Los Angeles, CA

Visit S.W.I.F.TSpondylitis Web Info For Teens

At: teens.spondylitis.org - Two new personalstories from teens have been added!

This issue ofSPONDYLITISPLUS

is made possible through the generous support of...

The Spondylitis Association of America is

solely responsible for the content of this

news magazine.

Need spondylitis info for teens?


City State Meeting Facilitator Email address Phone Number

Phoenix/Tucson AZ Jacquie Gregor [email protected] (520) 241-7064

San Diego CA Mike Supancich [email protected] (760) 889-5760

San Diego CA Tim Tompkins [email protected]

Los Angeles *New Group!* CA Richard Howard [email protected] (818) 892-1616 x231

Oakland CA Howard Tevelson [email protected] (510) 479-3220

Denver CO Noel Miles [email protected]

Atlanta GA Means Davis [email protected] (770) 529-5272

Boise ID Debbie Westervelt [email protected] (208) 573-9153

Chicago IL Joyce Terzick [email protected] (815) 744-5017

Chicago IL Kathy Lange [email protected] (847) 577-9940

Fort Wayne/Indianapolis IN Ken Prather [email protected] (260) 637-1705

Plymouth MA James Igo [email protected] (508) 833-4354

Baltimore MD Stuart Merenbloom [email protected] (410) 869-4157

Augusta ME Michelle Andrews [email protected] (207) 313-3871

Ann Arbor MI Rachel Morgan [email protected] (734) 709-7842

Grand Rapids MI Scott May [email protected] (616) 610-9130

Kalamazoo MI Teri Pack [email protected] (269) 532-2579

Charlotte NC Deanna Williams [email protected] (704) 993-8259

Hettinger ND Bonnie Smith [email protected] (701) 567-2771

Hettinger ND Gerry Fisher [email protected] (701) 391-3465

Morristown NJ Craig Gimbel [email protected] (973) 476-8976

Morristown NJ Barbara Schiller (973) 966-1736

New York NY Andrea Shapiro [email protected] (347) 766-8362

Portland OR Kathryn Houston [email protected] (360) 635-3238

Philadelphia PA Walt Lichmira [email protected] (215) 688-3145

Dallas TX Lynda DeGrow Kingsley [email protected] (214) 542-2869

Houston TX Richard Powell (409) 883-7822

Houston TX Stephen Haskew [email protected] (281) 337-3997

The Woodlands TX Wilson McCoy [email protected] (281) 460-1033

Seattle WA Paul Stevenson [email protected] (206) 465-7280

Spokane WA Joan Polzin [email protected] (509) 624-8214

If you'd like to find out more about support groups or for a complete list of groups and meeting dates, visit our website at: http://www.stopas.org/groups

You can also contact Elin Aslanyan here at SAA by calling 1-800-777-8189 ext. 222 or by email at [email protected] for more information.

LIVING WITH SPONDYLITISLIVING WITH SPONDYLITIS

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