FALL 2014 Quarterly Newsletter

Support for siblings | pg 10Caregiving :

In the Spotlight: Balance, safety, strengthAqua therapy | pg 6

Meet our MembersThe power of passion |pg 4

2 | The OutLook n Fall 2014 www.myositis.org

Published by: TMA, Inc.The MyOSiTiS ASSOCiATiOn

1737 King Street, Suite 600 Alexandria, VA 22314P: 800-821-7356 E: tma@myositis.orgF: 703-535-6752 W: www.myositis.org

Executive Director: Bob GoldbergEditor: Theresa Reynolds Curry

BOArd Of direCTOrS

Augie DeAugustinis, ChairPeter Della-Croce, Vice-ChairCraig W. Patterson, TreasurerRenee Lantner, SecretaryMarianne K. Moyer, Immediate Past ChairTerry D. AndersonDoreen CahoonJames KahlWilliam PrallDavid A. RudigJanet SchulerJohn C. SuttleRobert WortmannPat Zenner

MediCAl AdviSOry BOArd

Kanneboyina Nagaraju, DVM, PhD, ChairDavid F. Fiorentino, M.D., PhD, Vice ChairAlan Pestronk, M.D., Research ChairLisa Christopher-Stine, M.D., Nominating ChairDana P. Ascherman, M.D.Christina Charles-Schoeman, M.D.Robert Cooper, M.D.Brian M. Feldman, M.D.Mark Gourley, M.D.Steven Greenberg, M.D.Adam M. Huber, M.D.Todd Levine, M.D.Susan Maillard MSC, MCSP, SRPAndrew Mammen, M.D., PhDTahseen Mozaffar, M.D.Chester V. Oddis, M.D.Zarife Sahenk, M.D.Rup Tandan, M.D., MRCPJiri Vencovsky, M.D.Steven Ytterberg, M.D.

STAff

Theresa Curry, Communications ManagerBob Goldberg, Executive DirectorAisha Morrow, Operations ManagerCharlia Sanchez, Member Services

Coordinator

MAA Founder: Betty Curry

Dear TMA member,

2014 is turning out to be a milestone year for The Myositis Association.We are excited by the ongoing trials for inclusion-body myositis and theincreased interest of the pharmaceutical industry in treatments for der-matomyositis and poylmyositis as well. We have now established aForum on our website to enable those in the two IBM trials to share theirexperience with those interested in learning how they are doing. Finalresults from the trials will not be known until the trials are concluded andthe data is analyzed. But for now, through the Clinical Trials Forum, youcan get some sense of how patients in these trials are doing.

September 21 is the annual Myositis Awareness Day, and TMA has asignificant effort underway to increase public awareness of myositis andto improve physician knowledge of this disease. Through the generosityof Questcor Pharmaceuticals, TMA has funding this year to make a majorpush to educate the public and physicians. Nearly 2,000 physicians arereceiving copies of Myositis 101, our new Physician’s Guide to Myositis,TMA disease brochures for IBM, DM, PM and JDM, and a poster to beplaced in their office to direct patients to TMA who are looking for sup-port and information. We are also providing our 45 support groups in theU.S. with these same materials as well as car magnets, wristbands, anadvocacy newsletter, and other items to distribute to patients and the pub-lic to raise the visibility of our disease.

And don’t forget Myositis Dan, the thoroughbred racehorse running tobring attention to myositis! He is having a great season and has won sev-eral races already. It is estimated that 5-10 million people will hear or seethe word myositis just from watching Dan’s races.

TMA will also soon be surveying its members to learn from you whatwe can do to better serve the myositis community. The feedback from thesurvey will help to shape future activities of the organization and alloca-tion of funds. Please be sure to take a few minutes to share your thoughtswith us through the survey.

We are trying to do more than ever to promote education, awareness,support, research and advocacy. Your support and assistance is vital toour success!

Best regards,

Bob GoldbergExecutive DirectorThe Myositis Association

Corner Office

ByM 338 trial continues

TMA has been following the BYM338 trial for sporadicinclusion-body myositis and, after hearing from a few of thephysicians conducting the trials that more spots had openedup in the U.S., sent out a notice to all IBM patients in thedatabase. We encourage you to find a study center near youby going to www.clinicaltrials.gov; scrolling down toward thebottom of the page and clicking on the line "Show 43 StudyLocations" for a drop-down menu of sites around the world.

The site unfortunately does not seem to be updated. Someof the sites that say "Not yet recruiting" are full; others mayhave been given some additional slots. Meanwhile, sites havebeen added around the world. Novartis asks that everyone callits main number, 1-888-669-6682, if they have questions.

Remember to also visit the Community Forum pagewhere those interested can informally ask questions of thosewho have been in a drug trial. Go to www.myositis.org, click"community," then "Community Forum."

Stem Cell Therapy

TMA’s Medical Advisory Board recently issued thefollowing:

"Recent years have witnessed an explosion of stemcell ‘therapy centers’ that purport to cure diseases,including many forms of myositis. Lately, TheMyositis Association (TMA) has received a numberof inquiries regarding fat-derived stem cell treat-ments. These stem cell therapy centers promise tocure a myriad of diseases by using patients' own fatderived ‘stem cells’."

TMA's Medical Advisory Board cautions againstthe use of such treatments, since there is very little sci-entific data to validate the claims that these stem celltreatments provide a viable treatment option or cure.Furthermore, there are risks associated with thesetreatments including potentially exacerbating theinflammation and thus worsening the underlyingmuscle disease, promoting tumor and cancer growth,and unnecessary risks to patients from the stress ofsurgery and anesthesia. The scientific evidence thatthese fat-derived stem cells stop the progression ofmyositis is non-existent, and favorable reports arebased on purely anecdotal experiences, which havenot been validated. If these treatments are to be tested,

they should be examined in a strictly research environmentthrough a properly designed randomized clinical experimen-tal trial.

Until there is scientific evidence supporting using fat-derived stem cells as a treatment for myositis, the potentialrisks outweigh the potential benefits."

Prednisone, rituximab, exercise

TMA presents quarterly online "live discussions" with inter-national experts from TMA's Medical Advisory Board.During the summer series, we heard from medical advisorsabout new research regarding prednisone, rituximab and exer-cise.

If you are new to TMA, check our website for news ofupcoming discussions. Have a previous engagement at thetime of a discussion that interests you? No problem. Simplyleave your question in advance and it will be answered in turn.Transcripts of sessions are posted shortly after each live dis-cussion. Watch for news of the fall live discussion series. Wealso remind you via Facebook and Twitter. If you have a sug-gestion for a live discussion topic, email tma@myositis.org.

Fall 2014 n The OutLook | 3www.myositis.org

research reports

Trials, treatments, and discussions

4 | The OutLook n Fall 2014 www.myositis.org

Although we've known instinctively foryears that the creative arts broaden hori-zons, encourage honest expression andgive people with chronic illness anincreased sense of purpose, it's onlyrecently that scientists have had thetools to track this phenomenon. Reportsfrom patients, caregivers and healthprofessionals confirm that music calmspeople who have experienced trauma,both physical and mental; the satisfac-tion of painting or pursuing other visualarts reduces pain; and performance artcreates a sense of accomplishment inthose who can no longer be as active asthey were previously. Many hospitalsand rehabilitation centers include vari-ous forms of creativity in their "alterna-tive medicine" offerings.

Lately, as the number of people withchronic illness grows, this idea has cap-tured public attention. One of 2013’sbestselling books was Lissa Rankin’s“Mind Over Medicine: Scientific ProofThat You Can Heal Yourself." Rankinbelieves in the body’s ability to guide itsown healing. Rankin, a doctor andartist, includes so much research aboutthe benefits of creative expression inher book that creativity as a tool forhealth hardly seems “alternative” at all.

When TMA invited members to talkabout their experience with a new cre-ative passion — one either discoveredafter their diagnosis or pursued with

greater dedication in the absence ofother activities — patients respondedenthusiastically. "When I start painting,I forget about everything else," said JillHartley, a young dermatomyositispatient.

That intense focus might be exactlythe point, say art therapists. Today, morethan half of the major medical centers inAmerica have art therapy for pain man-agement, relaxation, healing and qualityof life. Creating from your own imagi-nation, whether it's visual art, music,dance, poetry, drama or storytelling,helps people find their place among therest of humanity during what can be aterrifying journey.

Jessie Park, the coordinator ofSanford Arts at Sanford’s Cancer Centerin Sioux Falls, SD, says that for art to beeffective, it must be fun and playful. "Ifpeople sit down and strive to create amasterpiece, frustration can set in. Mostadults simply don’t consider themselvesartists," she said. “When you presentfine art to people, the first thing theythink of is the critical business of look-ing at art. That introduces vulnerabilityand even fear." She suggests that any-one just starting out resolve that whatthey do is for their own enjoyment, notto be judged by themselves or others.

Traci, a DM patient, 54, who alsohas lupus, just started painting. "I neverthought I could paint!" she said. "It is

fun and it helps me take my mind off thepain." How did Traci get started? "Igoogled 'how to paint in oil?' I feel wenever stop learning!"

Keecha, also a myositis patient, hastaken up painting, but in acrylic. She isdefinitely following Park's advice tohave fun. "My stuff is random and I'llincorporate mixed media into my paint-ings." Keecha has already sold a paint-ing.

Not only are these TMA membersconnecting on TMA's Facebook page,they are also inviting each other to joingroups so they can view each other'swork, giving their new hobbies a socialas well as artistic aspect.

Art therapists are quick to point outthat "healing" doesn't always mean"curing." Some patients who knowthey are seriously ill create art as a kindof heirloom, to be treasured after theirdeath. Others, who may need long peri-ods of infusion as part of their treatmentfor myositis, find that they're unable tofocus on reading or other forms of busywork, but drawing, painting, sketchingor creative needlework makes the timepass more quickly and distracts themfrom treatment that reminds them alltoo visibly that they are not well.

And for those hospitalized for longperiods of recovery, art makes a differ-ence. Stress levels decline, blood pres-

Creativity eases pain,improves concentration 

Meet Our Members

Fall 2014 n The OutLook | 5www.myositis.org

sure stabilizes, and nurses report better communication and effective pain manage-ment with patients. Also changed are patients attitudes: families and nursing staffreport a big difference in the days that involve creative effort of some kind.

"I didn't set out to get any kind of help or comfort from my hobbies," says Tom,an IBM patient. "But there are things all through my life that weren't planned,including my IBM. I've always believed we were born to be involved, to DO some-thing. When it came to the point that this was all I could do, that's what I did." Tommakes metal sculptures and has found another pleasant pursuit for days when he isable to be more active. He used to enjoy scuba diving and had to give it up becauseof his disease. He developed an interest in searching for historic artifacts. With ametal detector, he started looking for buried treasure where long-ago raidersapproached the beach near his home. "I've found some interesting artifacts," hesaid. "If they aren't collectible, they become part of a sculpture."

Myositis patients Deanna Cross, Ray Dunton, Zachary Lewis and Mike Shirkfound creative expression in writing. Deanna wrote an autobiography thatincluded her struggle with chronic disease, Mike (who also produced gorgeouswatercolors after his diagnosis with IBM) collected dozens of practical tips forthose facing a gradual loss of independence and published them; Zachary wroteabout his sometimes difficult path to improved strength and focus; and Ray pub-lished a collection of original thoughtful poems and observations. All are avail-able on Amazon.

Others with a love for literature now find even more comfort in books.Myositis patients like Trudi and Mary now have time to do all the reading theyput off over the years. Mary has embarked on a study of classic literature. "I havefound substantial inspiration in the words that suffering people have written overthe years," she said. "Loss and redemption are common themes, and losses fromchronic disease are no different than others. You learn how to adjust and go on."

Some of you have embraced hobbies with a practical as well as a creative ele-ment. Teresa turned to quilting, Paula to embroidery, Connie started quiltingwhen she could no longer garden or ride her horse. "Having something that I ampassionate about is very good for the soul," she says. Becki has been quilting(and sewing) for more than 30 years, 21 of them since her diagnosis with DM:"I'm so thankful that I have something I love to do while being somewhat seden-tary." Karen has found she gets a sense of accomplishment from doing householdprojects, one small project at a time.

Other newly-discovered hobbies — while not generally classified as artistic— demand focus, energy and interest and provide the same benefits. Tammyreconditions old smaller furniture pieces in the hope of reselling them for a prof-it, and has found her creations in great demand. Rachael raises backyard chick-ens, mostly rare or endangered breeds. "This gives me peace of mind and is greatphysical therapy," she says.

Diarra was a chef, and now, with reduced energy, uses her culinary skills forhome cooking and has aIso embraced a new skill, learning how to make stainedglass. Janet always loved to bake and now has more time for it; David has foundthat cooking fulfills his creative side.

Some TMA members have embraced the performing arts. Michael had totrade in heavier instruments for a keyboard, but is still able to indulge his lovefor music; Crystal has become active in local theatre, finding that the physicalactivity involved also makes her stronger. Natalie tries to conserve her energy for

See Creativity, page 7.

Exercise in the water provides extra resistance and has ben-efits for everyone wanting to strengthen muscles. Formyositis patients, there are extra benefits, says SheraleeBeebe, a veteran aqua therapist who works with myositispatients and has taught the water sessions at several ofTMA's Annual Patient Conferences.

"I have seen people with severely weakened quadricepsmuscles able to get conditioning in the water that wouldnever be possible on land," she said. "They can actually geta full range of motion, while not worrying about falling."She has found that the buoyancy of the water is particularlyhelpful for those with bad knees, allowing them to bothbend and put weight on theknees without undue pressureon the joint.

"I've found also that, byadding weights and supports,we can provide a good workout for people who really can'texercise in any other way," she said. For those who needassistance from a caregiver, there's another positive aspect,Beebe said: "This is a way to avoid a caregiver being injuredif the patient loses his or her balance. If it happens in thewater, the water bears the weight." Beebe has found thatmost myositis patients, even those who are severely dis-abled on land, can successfully exercise in the water withouta caregiver taking an active part.

Many TMA members exercise in the water and find ithelpful. Here are some of their stories:

Bruce Gibbs has IBM and goes weekly to a hydrother-apy pool for a 30-minute session and finds it strengthens hislegs significantly. "In particular," he said, "one end of thepool has steps in the floor and I walk forward and back-wards up and down them, something impossible to do in theair." After 30 minutes, he finds that he's not too tired.

Kathy Corso Baker has been doing aerobics in thewater for 16 months. "The first thing I noticed was asmoother gait," she said. "After about a year, my strengthand endurance has improved to about 90% of normal. I hopeI never need to quit."

When Maryann Parker was first sick, she did physicaltherapy in the water, including leg lifts, squats and waterwalking. "I used to be a lap swimmer," she said, "so thephysical therapist worked with me until I could swim tenlaps, then released me and I continued to swim laps a fewtimes a week. Prior to DM I could swim a mile, and as mystrength got better I worked my way back up to a mile, butI found it was too much because I was exhausted the nextday. Now I swim a half a mile two times a week and itworks for me, and helps with strength and aches and pains."

Marianne Durkin has IBM, diagnosed in the spring of2012, and has done pool-based exercises one to three times

a week and kept up with land-based exercises, on the recommen-dations of a physical therapist. "Ido a variety of pool-based exercis-es, both in formal classes (stretch-

ing, aerobics and yoga) and individual exercises." Her watermovements include mimicking exercises on land: walking,bicycling and cross-country skiing movements, leg, ham-string quad stretches, toe and heel rising stretches, stair step-ping and sit-to-stands. The pools she uses are therapy poolsand have built in side benches, and ramps.

"All I can say is, that while I have had one IBM knee-collapse fall, I am still very mobile, walk without any assis-tance and continue to work full time. And I (and my physi-cal therapists) chalk much of that up to the pool and land-based exercises. With the help of flotation devices and agood therapist and the right therapy pool, just about anyonecan do some pool-based activity, even if they are wheelchairbound," she says.

Emily Filmore has dermatomyositis and does aquatictherapy once each week. "It was supposed to be twice aweek," she said, "but it was making me too tired and weakto work my muscles that much. I do leg lifts, lunges, row-ing, squats, toe and heel lifts, arm exercises with paddles,arm pulses, and 'bicycle riding' against the current. I testedmuch stronger today than I did when I started but we willcontinue to go slow and easy so I don't get damage."

6 | The OutLook n Fall 2014 www.myositis.org

Exercising in water providespain relief, safety, and strength

Practical Solutions

Find an aqua therapist near you.Go to www.physicaltherapists.com.

Fall 2014 n The OutLook | 7www.myositis.org

her singing on good days. Listen to her atwww.starnow.co.uk/nataiegerschowitz.

Those in remission from the dis-ease that once robbed them of theirstrength pursue physical activity witha new passion. Paul has finished hisfirst half-marathon and now is trainingfor a full marathon next year. Reythought she could never get on a bikeagain but then found an adult trikewhich enables her to ride again. Billworks out, skis and golfs constantly;Anupa says, "Exercise and cyclinghave become my passion and I thinkwhat keeps me from having tremen-dous weakness and other issues. I haveto constantly push myself harder toreach my goals and in turn my muscleweakness reverses."

Many of you have found comfortand connection in volunteering, mostoften in social media advocacy roles,promoting awareness or offering one-on-one encouragement. Most TMAmembers mentioned hobbies that keepthem connected to other people, butevidently creativity helps in ways evenwhen it doesn't involve social interac-tion.

That has been the case for Rachael,a severely disabled polymyositispatient who lives on a farm in ruralNebraska. "I was raised in a traditionwhere everyone contributes," shewrites. "So it was not unusual for me,like my mother and grandmother, tomake quilts and quilted artwork whenI could no longer garden or drive thetractor. I forget about my sorrowswhen I piece a beautiful patterntogether, and it also helps somehowwhen others admire my work. I'm ayearly winner in our county fair, andone of my quilts was auctioned for aMennonite relief sale and was the topmoney maker. People need to be pro-ductive, whatever their abilities."

Finding helpFinding an aquatic specialist can be very challenging depending on where youlive, says Beebe, noting that the popularity of aquatic therapy has gone up anddown in history. "It was popular during the polio epidemic and again during theVietnam war," she said, "and variable in between." Aquatic therapy is alwaysquite popular in Europe and south America.

Your ability to find a therapist may depend somewhat on its popularity inthe area where you live. Beebe gives a few pointers:

n Look for low-level aquatic group classes, arthritis classes, water walkinggroups, or seek private sessions with an aquatic therapy professional.

n Learn the levels of qualifications that serve the aquatic fitness and wellnessworld. The aquatic physical therapist (licensed), the aquatic rehab specialist(non-licensed), a personal trainer or medical exercise specialist with somewater training, or an aquatic fitness instructor with additional training fromagencies like the Arthritis Foundation, are all possibilities. The aquatic physicaltherapist is the most qualified and holds a medical license. This practitionermay be the easiest to find in hospitals, rehabilitation facilities and private clin-ics, and may take insurance and medicare. Some tips:

n You can seek a non-licensed aquatic specialist with aquatic therapy certifi-cation from www.arti.org, or find an aquatic exercise instructor certified byAEA (http://www.aeawave.com).

n Most certification companies list their certified instructors or list facilitieswhere their instructors teach. Some companies provide a question and answerservice on their web sites. Try www.atri.org, www.aqua4balance.com,www.aquaticnet.com, or www.aquatic-therapy-university.com.

n Search for swim pools in your area (YMCAs), check with hospitals, munic-ipal, county or regional swim pools, and private pools. Warm water pools areexpanding for children's swim lessons with companies like Petit Baleen (littlewhale). These pools, if approached, may allow adults during off hours to fillunused pool time. Inquire what the water temperature is (85 to 90 degrees isnice) and what programs they have to serve less fit populations or special needspopulations. Ask first if they have a stair entry or a hydraulic lift.

n The Arthritis Foundation and MS Society have approved water fitness pro-grams, may certify instructors in your area, and may have helpful information.

Creativity, from page 5

My mother often said someone oranother would be rolling over in his orher grave at the thought of this or that.Mom will be topsy-turvy at what I’mabout to share with you — toilet troubles.

When I was diagnosed with inclu-sion-body myositis, I wasn’t surprised.My father, who’d passed away eightyears before, hadthe same disease.I had watchedDad struggle toclimb stairs andrise from a chair;when I began toexperience thesame problems, Iwas ready for theverdict. What Iwasn’t preparedfor, though,because Dad would never have talkedabout it, was the toilet challenge. Thatevery time I plopped myself down, Iwould have to pray for enough strengthto get up again.

Before long, my husband and I hadan elevated toilet installed in the masterbath. Eventually, that wasn’t tall enoughso we removed the seat and added afive-inch-high molded plastic one withside arm supports. We left the right armin place but removed the other. Thatway, I could turn to the left and securethat foot under the vanity’s overhangwhile I gripped the tank lid with my lefthand and pushed myself up with myright.

Public restrooms were problematicuntil I remembered a trick my mothertaught me in a filthy gas station bath-room along a highway: the art of stand-

ing with my knees bent and hovering.Thanks to handicap-accessible stallsand their assist bars, this balancing actstill works. I tried it at a friend’s once —using my hand to steady myself againsta wall because there was nothing else tohold onto — but the floor’s black andwhite ceramic tile stared up at me men-acingly, daring me to take a fall. That’s

when myhusband and Idecided wewould haveto meetfriends atrestaurants orinvite them toour home.

Y o umay wonder,and Momwould hope

you don’t dare ask: What if I had to,well, you know, sit down on a publicporcelain pot? Despite the ever-presentsupply of Pepto-Bismol tablets in mypockets, it happened. During a meeting,my stomach’s gurgling and churningindicated the pretty pink pills had failed.I grabbed my cane, asked a friend tosafeguard my tote bag and did my bestto hurry from the room.

In the hall, I debated: unisex singlebathroom to my immediate left orwomen’s room downstairs with anaccessible stall equipped with multipleassist bars on both sides of the toilet?The elevator filled with the cacophonyof my tumultuous tummy. “Please don’tlet me embarrass myself at this world-renowned literary center,” I prayed.“And please, may that stall be avail-able.”

I sat down knowing I might have tocall my husband, who was runningerrands, to rescue me. A bit later, Ihuffed and puffed, pushed and pulled toget myself up. As I admitted defeat, Irealized my cell phone was in the bag Ihad left with my friend.

Finally, a door opened. Shoesappeared on the floor to my right. Iapologized to the woman for interrupt-ing but before I could ask her to make acall for me, she was done and scurriedout. A bit later, I heard my friend ask,“Are you in here?” I explained mydilemma. She offered assistance.But I’m sitting on the toilet,” I whim-pered.

“We all do it,” she said.

I aimed my cane towards the doorand tried to slide open the lock. When itdidn’t reach, I leaned further forwardand nearly fell from my perch.

My friend dropped to the floor, slith-ered under the door like a snake androse like a phoenix, a victorious smileacross her face. We worked like team-sters to get me standing and she held meup until my legs stopped wobbling.

That was the last time my husbanddropped me off anywhere. The choicethat day, using the multi-stall women’srest room with the non-lockingentrance door had been fortuitous. HadI opted for the unisex room with itsbolt-type lock on the inside, I wouldhave had a front row seat to the main-tenance man dismantling the door.

The last few years, I have avoidedlarge ladies’ rooms in favor of single-style ones where my husband canaccompany me. Now, it’s not just thetoilets that scare me. It’s soap dis-

Too much information?by Andrea Taylor Langworthy

8 | The OutLook n Fall 2014 www.myositis.org

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9 | The OutLook n Fall 2014 www.myositis.org

pensers designed for weight lifters. Doors with locks too stiffto open or close with weakening hands. Concussion-causingstone floors pooled with water because the hand towel dis-penser is across the room.

The truth is, I’ve come full circle. The only bathroomwhere I feel safe, the only toilet I want to use, is the one inmy home. The exact feeling I had as a small child when Irefused to use any potty but the one in my family’s secondfloor duplex.

Years ago, I never would have told this story. I was raisedto believe that disclosing or discussing bathroom-relatedissues is akin to airing dirty laundry in public. But sharingour stories and sharing a laugh about being trapped on a toiletwill keep us from crying, right? And we all know, if we startcrying, we may never stop.

Andrea Taylor Langworthy writes a peri-odic column for The OutLook about herexperiences and observations as apatient. Andrea is a free-lance writer wholives in Minnesota, where she and herhusband lead the myositis "Keep-In-Touch" support group. Andrea has inclu-sion-body myositis.

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Teenage and young adult siblings of those with chronic diseases are often over-looked, but may be affected more than it appears, a recent British study showed.

Eight siblings of children with rare diseases (none of them myositis) wereincluded in a series of interviews, using visual prompts as well as questions toengage them. The results showed clearly that siblings are greatly affected emo-tionally, pragmatically and relationally by the ill health of a child in the family.

The researchers found that four key themes ran through the lives of the sib-lings: perceptions of the condition and its symptoms, impact on daily life, emo-tional consequences, and ways of coping. The siblings often had researched andobserved to the extent that they had considerable knowledge of the condi-tion. Many of them had taken on important roles in the family in providingcompanionship and even managing the symptoms and rehabilitation of their illsibling.

Researchers also found that siblings were acutely aware — not only of theseverity of the disease — but also of the importance of protecting parents fromdiscovering how much they knew. Far from resenting the time invested bythe parents and other family members in the ill child, siblings often cameto view their own needs as being relatively less important. As a conse-quence, relationships outside the family had a tendency to suffer aseveryone became caught up in the very pressing issues at home.Siblings often reported feeling isolated, but also expressed the feelingthat they could not identify very well with peers — whether at school,in the neighborhood or among young adult friends — who had whatthey considered frivolous lives, unencumbered by the day-to-daynecessities of caregiving.

Even those who had gone on to marry expressed having lesspatience with spouses demanding attention for what theysaw as fairly unimportant matters. Some of themexpressed "feeling guilty" for leaving the family,whether it was for marriage, college, or to establish ahousehold of their own, and they reported returninghome for visits as often as they could. On the otherhand, the siblings did not express a lower level of hap-piness than the population at large. In fact, all eightexpressed some gratitude for the experience of assum-ing adult responsibility at a fairly young age.

Researchers suggested that siblings of children oryoung adults with a chronic illness find ways to con-nect with other siblings in the same situation and rec-ommended that parents be aware of this need for sup-port. They also recommended that teachers at the pre-college level be informed of home situations thatdemanded attention from young family membersamong their students.

10 | The OutLook n Fall 2014 www.myositis.org

Support for siblings

Caregiving

The Myositis Association has been expanding its support net-work in several ways, and encouraging all local supportgroups to plan events for September 21, Myositis AwarenessDay. This fall, be sure to join in the effort to reach more myosi-tis patients and their families. Find out how your local supportgroup plans to recognize Myositis Awareness Day by going towww.myositis.org and clicking "events." If a group near youis hosting an event, invite your family and friends. Share infor-mation with neighbors in your community so that you canspread awareness about this disease, or come up with yourown unique event to draw attention to myositis. To locate theclosest support group, email tma@myositis.org.

If there is no support group near you, TMA can help withour new "virtual support groups." TMA introduced this con-cept, with a series of disease-specific conference calls, lastspring, and will offer the series again, beginning this fall. Inthe meantime, those who are without a nearby support group

can visit TMA’s Community Forum and Facebook page tokeep in touch with other myositis members and friends.

In addition to improving its virtual support offerings, TMAis establishing an organized support network in Canada. OnTMA's website, you can now find a Myositis-Canada supportgroup page in English, with a link to the French translation.There's also a translation of TMA's myositis brochure inFrench and there will be a Spanish translation available laterthis year.

Finally, do you have a suggestion for TMA? Is there any-thing about our current programs and services that you enjoyor would like to see changed? TMA has designed a MemberSurvey to help us improve service and respond to patientneeds. The survey will be available online and in print. If youwould like more information about this member survey, or toget a hard copy, call 1-800-821-7356.

Fall 2014 n The OutLook | 11www.myositis.org

New additions to the support communityby Charlia Sanchez

Keep in Touch

Just before The OutLook went to print,we learned that Betty Curry, TMA'sfounder, died August 9 in a Harrisonburg,VA retirement home. Betty was born in1928 in Illinois.

She was a successful realtor,entrepreneur and artist before her diag-nosis of inclusion-body myositis in1993. She tackled the disease with thesame energy and optimism that charac-

terized all her endeavors. Her first step in establishing thenon-profit that later became TMA was to publish the firstissue of this newsletter from a tiny office in the basement ofher Harrisonburg home, using a mailing list she piecedtogether from the National Institutes of Health and theNational Organization for Rare Disorders.

Betty loved to tell stories about her enrollment in a clin-ical trial at NIH. Realizing that she would never find somany myositis patients in one place again, she went fromroom to room in a hospital gown and slippers to recruit thefirst members of the organization’s board of directors.

While there, she also recruited the nonprofit’s medical advi-sory board from the doctors running the trial.

No one could say no to Betty. Admirers described her as"a force of nature."

She persisted in her idea of a non-profit devoted solelyto myositis and steered the organization through its earlydays. She expanded the medical advisory board, recruitedfriends and relatives to volunteer, searched out national andinternational experts and oversaw every detail until TMAhad its own office and paid staff. She retired as executivedirector in 2000 and pursued other projects with the sameenergy and determination.

In keeping with Betty's philosophy, her family requeststhat her friends and admirers think of Betty the next timethey believe they can't do something, and then go ahead anddo it anyway.

Lindsey Funeral Home in Harrisonburg has set up awebsite for Betty's friends to remember her and leave mes-sages for the family at www.lindseyharrisonburg.com.

In memory Betty Curry, TMA's founder, dies

TMA, with the help of Questcor Pharmaceuticals, has published a special newsletter,"The Advocate." if you want some ideas for advocacy and publicizing myositis onMyositis Awareness day or any day, email TMA, tma@myositis.org.