Your IC Awareness Month Kit

Transcription

1 Your IC Awreness Month Kit Six Wys You Cn Help September is IC Awreness Month this yers me is Millions Suffer, Few Underst: It s time tlk bout IC/BPS Why? Despite millions dollrs invested in reserch some fbulous new brekthroughs in tretment, we re still shckled by perception tht IC isn t tht serious bldder diseses re inconsequentil. Every week, we receive sries from ptients who re ld tht IC is ll in ir heds. Yes, hundreds physicins re now treting ptients compssiontely but re re thouss more who simply don t hve clue. Even Dr. Drew Pinski minimized IC s grb bg dignosis on his ntionl TV show lst yer. You re eyes ers your community, more importntly, wht you do dy will influence how IC ptients future re treted. Do you wnt ny more ptients be ld tht IC is ll in ir heds? Do you wnt more women undergo completely inpproprite hysterecmies only discover tht ir pin is coming from ir bldders?? Do you wnt children with IC be punished by ir techers for sking use restroom?? If not, n let s do something bout it TOGETHER! 1. Spred Word with Socil Networking Shre our cmpign website ( with ll your friends collegues on Fcebook, Twitter, Pinterest, Instgrm LinkedIn. Add IC Awreness Month timeline prile pictures your Fcebook pge. Write few sentences or even sry bout cmpign for your blog or wht s on your mind sttement Every dy in September, dd our IC Dily Fct your Fcebook pge or blog. You cn find new fct for ech dy on cmpign website. 2. Ask for Proclmtions Encourge your City Council, County Bord Supervisors, Stte Assembly or Senrs US Sente or Congressmen pss proclmtion honor IC Awreness Month. To mke this esy for you, plese phocopy letter we ve included t end this rticle. Send your US Senr or Representtive personl letter sking m support incresed funding for urologic pin reserch through through Ntionl Institutes Helth. 3. Send Out Our Press Relese Send our press relese your locl regionl pper, sking if y would do sry bout IC IC Awreness Month. The press love personl, locl sries. Shre few prgrphs bout your life with IC in your community, s well s ny obstcles you hve fced with finding docrs, getting pin cre /or public perception bldder diseses. Donte some IC books your locl librry. You cn purchse ny books in ICN Shop designte librry tht you would like us send it. THE IC OPTIMIST LATE SUMMER 13 27

2 Ask bout helth conferences in your community see if you cn provide booth on IC pelvic pin. 4. Educte Your Docrs Bring IC Awreness mterils poster ech your physicins nursing stff plce in ir fices witing rooms. Shre ltest IC rticles with your physicins. The new houts on AUA Guidelines would be n excellent resource shre. If docrs in your community re not knowledgeble bout IC, sk your locl hospitl or medicl ssocition if y cn include interstitil cystitis / bldder pin syndrome s trining pic in ir resident gr rounds or cme progrms. Contct hospitl eduction deprtment sk who coordintes eductionl progrms! If y re interested would like hve speker, IC Network will help. Plese send us n emil t: info@icwreness.org 5. Mke Dontion Is re nerby support group tht could use n extr $25 help underwrite ir costs? Often support Design Poster! We re giving $10 ICN Gift Certifictes everyone who designs dontes poster for use for IC Awreness Month with your own interprettion me Millions Suffer, Few Underst. All posters will be dded our website winner will receive $75 gift certificte from ICN Shop! The winning design my be fetured on IC Awreness Month T-shirts clothing, proceeds which will be dedicted IC reserch. Requirements It must include three things: #1 - It must sy IC Awreness Month inclued URL: icwreness.org #2 - It must fit on n 8.5 by 11 piece pper Emil entries by September 15, 2013 info@icwreness.org 28 THE IC OPTIMIST LATE SUMMER 13 group leders py for support group ctivities out ir own pockets.they my not sk, but y cn undoubtedly use some help! Give m cll sk if re is nything tht you cn do help in ir efforts. It my be funding, it my be helping find meeting loction or perhps ssembling newsletters. The more hs vilble, better! We think money rised in YOUR re should benefit ptients in YOUR re. From support g roups reserch centers, low income orgniztions helth dvoccy progrms, se re groups tht mke biggest difference. Plese crefully consider needs your region n support those orgniztions tht re mking difference in your dily lives, wher it be food bnks, senior centers, helth orgniztions more! We commend IC ptients Deli & Vicri Hernez for setting up n Interstitil Cystitis Endowed Fund t KU Med Hospitl during 2010 IC Awreness cmpign which benefits ptients in Knss City re. We encourge you donte directly IC reserch centers whenever possible! You cn find list on our website. 6. Mobilize Your Support Group If re is no support group in your re, consider strting new group provide support build friendships mong ptients who ten feel very isolted lone. Yes, it tkes time effort but it cn chnge lives for better. If you re in support group, sk m prticipte in IC Awreness Month. They should hve meeting in September, if possible, send press relese out locl pper promoting your group meeting dte. As group, rech out n IC ptient who is housebound. Cll m sk if y need ny help. Bring support ir home, long with some IC friendly foods compnionship. Spred word bout drug ssistnce progrms friends who re hving trouble pying for medictions. Lern more t: If you hve children with IC in your community, write letter your locl Bord Eduction sking for compssionte restroom use policies. 7. Keep us Informed Plese shre your ctivities with us! We d love her wht you re doing. Send press clippings or links : info@icwreness.org Fcebook Timeline Imge Contest We would love fer selection Timeline imges tht ptients cn pick from for month September! Like poster contest on this pge, plese crete n imge tht shres your sry /or life with IC. All lnguges welcome needed so tht we cn exp our interntionl outrech effort. Requirements: #1 - It must sy IC Awreness Month include URL: icwreness.org #2 - It should be 850 px wide by 315 px high #3 - It should be.jpg,.gif or.png file #4 - Plese shre it on Interstitil Cystitis Network & IC Awreness Month Fcebook pges Emil file : info@icwreness.org

3 PROCLAMATION REQUEST IC Awreness Month - September icwreness.org Millions Suffer, Few Underst: It s time tlk bout IC/BPS Der My life /or life fmily member or friend hs been severely disrupted by interstitil cystitis, devstting pelvic pin condition. I hope tht you will consider issuing proclmtion on behlf IC Awreness Month help educte our community bout needs 12 million men women (in USA) struggling with this ten gonizing condition. IC Awreness ess Month Proclmtion Wheres, 3 8 million lio women in USA 1 4 million lio men ll ges suffer fe devstting tin effects fects this chronic c pelvic pin disorder; Wheres, mny physicins re unwre re sympms effects fect interstitil iti cystitis/bldder is/b de pin syndrome, cusing ptients suffer fe for yers before y obtin correct dignosis s medicl tretment; Wheres, medicl reserch efforts fo in interstitil il cystitis/bldder s/b de pin syndrome hve yet discover cuse nor cure for this disbling medicl condition io federl erl reserch money hs been severely reduced; Wheres, re is criticl icl need educte e support individuls ividuls fmilies ie ffected fe by interstitil cystitis; s; Now, Therefore, e Be It Resolved ed tht September ember 2013 is hereby designed s Interstitil Cystitis is Awreness Month during which ptients, support groups orgniztions ons cll l for increses in public privte secr funding ng for medicl reserch, trgeted ed eductionl progrms for helth pressionls, s, ptients public recognition on urologicl ogicl disorders s significnt public helth h issue. Proclimed This Dy, 1 September ember 2013 I thnk you for your considertion. n Sincerely, IC Awreness Month is project Interstitil i Cystitis is Network, socil dvoccy helth h eduction compny founded by IC ptients for IC ptients. Lern more bout IC by visiting: ing: /w IC Network, PO Box 2159, Heldsburg, CA (v) (f) icnetwork@mc.com com (e) THE IC OPTIMIST LATE SUMMER 13 29

4 PRESS RELEASE IC Awreness Month - September icwreness.org Millions Suffer, Few Underst: It s time tlk bout IC/BPS FOR IMMEDIATE RELEASE Sept 1, 2013 September is IC Awreness ess Month Dignostic tretment guidelines in fer fe hope (Snt Ros, CA) This September, ptients round world will unite shre ir personl sries struggles with interstitil cystitis is / bldder pin syndrome (IC/ BPS). The 2013 me, Millions Suffer, Few Underst d encourges ptients providers tlk openly bout this common yet ten misundersod pelvic pin condition. "I see ptients every dy who hve been exposed medicl system tht hs ten been poorly responsive ir needs. Frequently, condition ion is not dignosed or clinicin feels uncomfortble ort with vilble, ble, effective fect mngement strtegies. Furrmore, s. re ppers be generl lck knowledge in ly community tht condition ion even exists. s. fered Robert Moldwin MD (Smith Institute Urology, NY). He continued nued My gretest hope is tht IC Awreness month will l hve positive ive impct for both clinicins AND ptients. Interstitil cystitis cn be disbling. Hunner s ulcers /or pinpoint hemorrhges re found on bldder wll, llowing urine penetrte e deeply in tissue. Inflmmtion n triggers sympms urinry frequency, urgency, pressure /or pin, disrupting sleep, work norml dily life. Simple tsks such s driving, sitting intimcy cn be pinful. 30 THE IC OPTIMIST LATE SUMMER 13

5 PRESS RELEASE (continued) Reserchers re trying determine why IC/BPS ptients ten struggle with or conditions such s: pelvic floor dysfunction, irritble bowel syndrome, endometriosis, fibromylgi, chronic hedche TMJ. An bnorml pin processing or nerve hypersensitivity disorder my be prt problem. Jill Osborne MA, President IC Network, fered During IC Awreness Month, ptients re encourged be helth ctivists. They cn distribute eductionl mterils physicins community clinics, design posters, strt locl or virtul support groups, encourge ir politicl representtives issue proclmtions, shre ir sries with locl medi outlets donte IC reserch centers. One key gol is encourge ptients tlk with ir docrs if y re continuing struggle with sympms. New guidelines were relesed by Americn Urologicl Assocition (2011) which provide updted dignostic tretment strtegies. Ptients who re low income /or lck helth insurnce re given vriety behviorl OTC strtegies tht my help. Lern more bout IC cmpign by visiting our website, Additionl medi mterils, bckgrounders, expert interview opportunities, IC fct sheets re lso vilble. Contct: Jill Osborne, President Interstitil Cystitis Network - PO Box 2159, Heldsburg CA (p) or (f) (e) jill@ic-network.com Founded in 1995, Interstitil Cystitis Network ( is womn owned, "socil dvoccy" helth eduction compny dedicted interstitil cystitis or pelvic pin disorders. Using internet, we crete innovtive solutions pressing problems fcing ptients dignosed with urologic conditions, medicl cre providers who cre for m reserch community seeking new tretments cures. For pst 18 yers, we hve provided criticl 24/7 support ptients in need, developed new eductionl mterils, conducted vitl reserch, provided webinrs/lectures creted IC wreness cmpigns, ll t NO COST ptients who visit our website. THE IC OPTIMIST LATE SUMMER 13 31

6 FACT SHEET Fct Sheet IC Awreness Month - September icwreness.org Millions Suffer, Few Underst It s time tlk bout IC/BPS Wht is it: Interstitil cystitis is chronic c pelvic pin condition with n unknown etiology. Ptients typiclly experience ence "n unplesnt senstion (pin, pressure, discomfort) ort) perceived be relted urinry bldder" tht lsts longer thn six weeks in bsence infection or or identifible cuses. Some ptients hve lrge, bleeding eding ulcers in ir bldders, known s "Hunner's Ulcers." Ors my hve more modest bldder wll irrittion inflmmtion. Some hve no bldder wll dmge yet still hve severe bldder sympms. IC ptients ten struggle with coexisting medicl conditions such s pelvic floor dysfunction, vulvodyni, prostdyni, irritble bowel syndrome, nxiety disorder ors. Nmes: This syndrome is clled by vriety nmes, including: interstitil til cystitis (IC) - commonly used throughout world bldder pin syndrome (BPS) - primrily in Europe hypersensitive bldder syndrome (HBS) - primrily in Jpn n urologic chronic pelvic pin syndrome (UCPPS) - in reserch rch studies chronic c pelvic pin syndrome (CPPS) complex bdominl pelvic pin syndrome (CAPPS) Sympms: The sympms cn vry gretly between individuls even for sme person throughout month, including: urinry ry frequency - s ten s every 10 minutes or tl l 60 times dy urgency - sudden, unpredictblee moments when y despertely need empty ir bldder pressure - n uncomfortble feeling heviness or fullness in bldder pelvic or bldder pin - mild tenderness intense, gonizing pin. Pin typiclly worsens s bldder fills with urine is n relieved fter urintion. Pin my lso rdite t lower bck, upper legs, vulv penis. Epidemiology: In 2009, RAND Interstitil e Cystitis Epidemiology ogy (RICE) study providedd snishing new dt on prevlence IC in USA. This Ntionl Institutes Helth funded study estimted tht million women in USA hve sympms interstitil cystitis, much higher thn ws previously thought. Approximtely 1 4 million men struggle with sympms though true rte hs yet be determined becuse men re ten dignosed chronic prosttitis/chronic pelvic pin p syndrome (CP/CPPS) insted. IC cn occur in children, teens, young dults elderly. Cuses: The cuse IC remins mystery though compelling reserch suggests tht IC my be prt o f regionlg chronic pelvic p pinp disorder, e r, involvingg neurosensitiztion tion pelvic p floor tension. IC ptients lso hve protein in ir urine, ntiprolifertive fcr (APF), which ppers block norml growth cells tht line inside wll bldder. Thus, it my tke longer for n IC ptient hel when ir bldder is injured or irritted. Reserchers ers re lso exploring role heredity in IC. In some cses, IC hs ffected f mor dughter u or two sisters, but it does not commonly run in i n fmilies. 32 THE IC OPTIMIST LATE SUMMER 13

7 FACT SHEET (continued) Dignosis: It's not unusul for ptients hve seen five or more physicins s y seek medicl tretment. A dignosis IC/BPS is bsed on clinicl sympms, including presence pin (usully occurring s bldder fills with urine), frequency /or urgency. The dignosis IC cn be mde confusing becuse wide vriety nmes tht re ten used describe sympms bove. It's not unusul for IC ptients hve been misdignosed with cystitis, bcteril cystitis, overctive bldder, urethrl syndrome, trigonitis, urethritis or "sensitive" bldder before y receive correct dignosis. Men re ten mislbelled s prosttitis ptients. Tretments: In 2011, Americn Urologicl Assocition relesed guidelines for dignosis tretment IC, including six step tretment procol. Ptients generlly begin with lest invsive rpies, if needed, progress through vrious steps more invsive rpy. Step 1 - dequte wter intke, diet modifiction, het or cold pcks, OTC supplements, medittion guided imgery, pelvic floor relxtion, bldder trining, tretment or relted conditions reduction stress. Step 2 - Physicl rpy for pelvic floor dysfunction, pin mngement, vrious orl medictions (Amitryptiline, cimetidine, hydroxyzine, pensn polysulfte), bldder instilltions (lidocine, heprin, dmso). Step 3 - low pressure, short durtion hydrodistention, hunner s ulcer tretment with fulgurtion, electrocutery, trimcinolone Step 4 - neuromodultion Step 5 - cyclosporine A, botulinum xin A Step 6 - surgicl interventions The UPOINT System for Clinicl Phenotyping for Chronic Pelvic Pin cn lso help physicins crete cusmized tretment pln, prticulrly for complex difficult tret ptients who hve multiple medicl conditions. Diet: Diet modifiction is usully first suggestion fered by physicins is criticl for ptients struggling with bldder irrittion inflmmtion. Foods high in cffeine, cid lcohol irritte wounds in bldder triggering IC flres, pin discomfort. The foods most ptients must void include decf regulr cfees, blck tes, green tes, sods, ll crnberry products, most fruit juices, energy drinks, m bsed foods, chocolte some vitmins (Vitmin C B6). On orh, some foods cn be soothing n irritted bldder. A comprehensive diet list cn be found t: Flres: Interstitil cystitis ptients ten struggle with sudden drmtic worsening ir bldder sympms, known s n IC flre. Lsting from hours weeks, flres cn be unpredictble, disruptive, frustrting difficult mnge for both newly dignosed vetern IC ptients. The most frequent types flres occur when bldder wll is irritted, when pelvic floor muscles become tight or spsm, for women, when hormone levels chnge. THE IC OPTIMIST LATE SUMMER 13 33

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