Tswv yim rau boost cov qoob loo qoob loo thiab resilience- los leah dub
Nyob nrog Hemophilia A yuav overwhelming rau cov neeg mob thiab lawv tsev neeg. Tsis zoo xwb yog ib tug kab mob loj uas yuav ua rau muaj teeb meem xws li los ntshav thiab ob leeg puas, tiam sis txoj kev kho nws tus kheej yog burdensome, yuav tsum tau nquag intravenous infusions ntawm clotting factor concentrates. Cov neeg mob nrhiav tau lawv lub neej zoo cuam tshuam dab tsi tsis yog lub cev, tab sis psychologically thiab socially thiab, nrog rau kev ua hauj lwm, tsev kawm ntawv thiab kev sib raug zoo tag nrho tej yam. Kev tshawb fawb qhia tias ib feem peb ntawm hemophilia A cov neeg mob muaj kev nyuaj siab, thaum nws tus kheej esteem thiab nws tus kheej autonomy no kuj negatively tej yam.
Txawm li ntawd los, nrog rau txoj kev taw qhia thiab cov cuab yeej, cov neeg mob yuav overcome ntau yam ntawm lawv tus kab mob hais txog txoj kev sib tw. "Peb xav kom cov neeg uas hemophilia A tsis muaj caij nyoog tsawg tshaj li koj los yog kuv yuav tsis tau nws," hais Leonard Valentino, MD, tsoom txoov ntawm lub teb chaws Hemophilia Foundation (NHF) thiab founder ntawm lub Hemophilia thiab Thrombophilia Center ntawm Rush University kho mob center nyob Chicago. "Qhov ntau kev txawj ntse yog hais txog lawv tus kab mob thiab kev xaiv, qhov zoo tshaj yuav muaj nuj nqi thiab integrate rau hauv xijpeem txoj kev ua neej lawv xaiv." Cov npe hauv qab no yuav pab cov neeg nyob lub neej kom tag nrho.
Nrhiav ib txoj kev kho uas ua hauj lwm
Lub sij hawm siab koom tes nrog prophylaxis yog ib lub ntsiab struggles rau cov neeg mob thiab lawv niam thiab txiv, uas yuav tsum tau tswj infusions ob peb zaug ib lub lis piam. Tsis tau, adherence yog tseem ceeb heev: nyob rau hauv ib txoj kev tshawb no, 69% ntawm cov neeg uas cuam tshuam prophylactic kho ib los yog ntau zaus los ntawm prophylaxis thaum yau muaj ho ntau arthropathy 20 xyoo tom qab ntawd. Pab cov neeg mob thiab tsev neeg tsim ib lub sij hawm kho uas fits lawv txoj kev ua neej yog li no tseem ceeb.
"Peb sim xyuas seb: thaum twg cov niam txiv ua hauj lwm, yog cov me nyuam nyob rau hauv tsev kawm ntawv, yuav muaj kev ua si muab kev koom tes? Peb tsis puas hais tias nws yuav tsum tau muaj ib hnub Hnub Ib thiab Hnub Hnub Tsib kho lub sij hawm; Yog lis xaus muaj ntau so, peb sim haum uas rau lawv [regimen],"hais Andrea Miller, RN, BSN-BC, tus nais maum fwm ntawm lub Hemophilia Outreach Center hauv Ntsuab Bay, WI. Yog hais tias ib tug neeg mob yog chav, Miller hais tias tsis mus qhuab qhia tab sis mloog. "Lawv yuav tsum tau peb hnov cov txheej xwm seb lawv muaj ib lub sij hawm nyuab heev, thiab pab lawv nrhiav tau ib txoj kev zoo." Miller notes tias cov tshuaj txawv rau lub lag luam muaj ntau zog yooj ywm. "Ib txhia yog me ntsis ntev-kuj thiab tej zaum yuav zoo rau ib tsev neeg uas yog tibneeg hu tauj coob thiab tsis muaj sij hawm rau ib hnub peb-ib-lub limtiam infusion sij hawm," nws hais.
Yooj yim ntxhov siab vim txog infusing rau pej xeem
Dr. Valentino txiav ntaqwm ua hauj lwm nrog kawm ntawv qib siab-twg uas nkaum lawv hemophilia ntawm roommates, nrhiav tej chaw mus infuse hauv zais cia. "Txoj kev nyuaj siab uas imparts yog enormous," nws hais. Nws txhawb kom cov neeg mob yuav tsum qhib thiab ncaj ncees txog lawv tus kab mob. ' Yog tsis txawv dua leejtwg muaj ib lub hauv caug hloov. Koj tsis yuam kom ib tug phooj ywg mus taug kev thiab nce thiab nqis lub stairs yog hais tias koj paub tias yog yuav muab ib tug sib tw rau lawv. [Ib yam li] koj yuav tsum tau ua dab tsi yog tsim nyog coj koj lub rooj hais kom sib haum thiab yog hais tias txhais tau tias txhaj ib hemophilia tshuaj nyob rau hauv pej xeem, yuav tsum tsis muaj stigma uas,"nws hais.
Miller paab nrog cov neeg hluas los organize nthuav qhia ntawm lawv lub tsev kawm ntawv pab kev kawm lawv cov phooj ywg. "Raws li cov me nyuam tau laus lawv yuav ua rau lawv nrog peb," nws hais. "Lawv xav tias nws yog tus coolest tshaj plaws yuav rub tawm ib koob thiab qhia sawv daws li cas lawv poke lawv tus kheej- tag nrho lawv cov phooj ywg yog nyob rau hauv awe thiab lawv yog cov nrov ib yam ntawm cov cia li!"
Muab kev taw qhia rau lub cev kev ua ub no
"Peb xav txhawb peb cov neeg mob yuav tsum txawj ntau yam. Lawv yeej yuav tsum tsis tau sedentary,"hais Dr. Valentino. Tsis zoo li xyoo lawm yav tas los thaum cov neeg mob txoj kev ua tau txwv, "hnub no txoj kev kho regimens yog li ntawd, zoo tias cov kev txwv yuav tsum tau tsawg kawg nkaus." Tsis zoo xwb yog ib ce zoo rau cov neeg lub cev thiab kev puas siab puas ntsws zoo, tab sis nws txhawb ob leeg kho mob, uas yog ib qho tseem ceeb rau cov neeg uas hemophilia A. "tuav yooj ywm, ntau yam ntawm tsab ntawv tsa suab thiab cov nqaij muaj zog yog ib qho tseem ceeb heev los tiv thaiv ob leeg, uas yog qhov twg cov neeg mob bleed feem ntau tshwm sim,"hais Dr. Valentino. Ib tug noj qab nyob zoo yuav txo kev nyuab siab rau cov pob qij txha.
Rau cov neeg uas xav mus ua si kev ua si, "Nws yog txog mitigating uas yuav raug," hais Dr. Valentino. Thaum muaj tej yam kev ua ub no xws li boxing thiab football yog discouraged, feem ntau ncaws pob yog kheej nrog txoj kev ceev faj. Piv txwv li, Miller muaj ib tug neeg mob uas nyiam nyom nyhav thiab ua si basketball Tuesdays thiab Thursdays- uas rau nws yuav ua tau ntau bleeds- ces lawv kho nws lub sij hawm mus infuse rau cov hnub. Nws tseem ceeb heev rau cov neeg paub tias lawv yeej tseem ua tej yam uas lawv hlub- "cia li muaj me ntsis kev taw qhia me ntsis rau yuav ua li cas kom tau txoj kev ywj pheej," hais Miller.
Muab cov txheej txheem los kov qhov mob
Rau ib txhia neeg mob, mob yuav yog ib barrier los kho. Nyob rau hauv ib txoj kev tshawb no, ib tug neeg mob uas mob hemophilia muab sau tias nws "txhob txwm tsis nco qab txog kev kho yog hais tias nws yog ib qho uas yuav raug mob (e.g., thaum nyob hauv tsev) vim yog qhov mob infusion ua. Ib tug mob-tswj txheej txheem Dr. Valentino pom zoo yog guided imagery, ib meditative xyaum tias ib tus nais maum, psychologist los yog cov neeg ua hauj lwm kev yuav qhia. "Cov neeg mob tseem muaj qhov mob, tab sis lawv tsis txaus siab rau qhov mob li ntau," nws hais.
Rau cov me nyuam, Miller tswv yim siv ib numbing cream hla lub infusion qhov chaw los yog yog lub tswv yim ntawm qhov xav tau yog qhov teeb meem, ib tug zoo li tus ntaus ntawv hu ua ib Buzzy (muaj nyob rau amazon.com). "Nws sits rau ntawm caj npab saum toj no uas koj yuav [infuse] thiab cov vibrations distract lub hlwb los ntawm koj tus mob," nws piav txog.
Pab cov niam txiv thiab cov neeg saib xyuas tswj kev nyuab siab
Muaj coob tus neeg zov me nyuam pom tias infusing ib tug me nyuam tam sim no nws txoj kev sib tw. Niam tshwj xeeb tshaj yog nriaj, hais Miller, vim hemophilia A yog kis los ntawm leej niam (los yog tus ntxhais ua ib tug cab kuj). "Tsis zoo xwb lawv nriaj nrog lub txim ntawm xav, 'Kuv muab tus kab mob no rau kuv tus tub,' tab sis lawv kuj xav tias, 'Tam sim no kuv yuav tsum ua rau nws,' los yog 'Nws yog mob thiab nws txhaum." Miller pom zoo taug kev cov niam txiv los ntawm txoj kev ua ib infusion mus txog rau thaum lawv zoo heev nrog cov kauj ruam muab kev koom tes. "Peb siv sij hawm ntau tham txog qhov ntshai lawv yuav tau ua rau lawv tus me nyuam nrog ib rab koob. Yog hais tias nws yuav siv sij hawm ntau zaus lawv los nrog lawv tus me nyuam xyaum, peb qhia rau lawv, 'Uas yog kheej!'" Nws kuj maj mam nco ntsoov qhia cov niam txiv tias lawv cov me nyuam yuav hnov lawv kev nyuaj siab thiab ntxhov siab vim. Cov pab pawg neeg no hugely beneficial rau cov neeg zov me nyuam uas yog chav, Sfering ib qho chaw tham nrog lwm cov niam txiv thiab luam tswv yim om tswj kev nyuab siab. "Cov niam laus tau txhawb lawv tias nws yuav yooj yim- tias lawv cov me nyuam yuav loj hlob mus ywj siab cov neeg laus ib hnub twg," hais Miller.
Pab nyob rau hauv lub tsev txhawb network
Cov neeg mob uas muaj hemophilia A feem ntau xav tau kev pab nrog rau lwm yam teeb meem, thiab qhov no raug rau cov kev them nyiaj yug uas lawv yuav tsum tau. Dr. Valentino hais tias "tus hub ntawm cov neeg paub thiab kev them nyiaj yug" yuav tsum yog ib tug Hemophilia Kho Center (HTC), tsev rau ib multidisciplinary tea, cov kws kho mob, cov kws kho mob, lub cev therapists, kev ua haujlwm, psychologists thiab lwm cov kws txawj, specializing hauv los ntshav disorders. Ntxiv rau ib one-one-one, HTCs kuj muab kev kawm ntawv, txhawb pawg, mentoring txuj thiab lwm cov kev pab los pab cov neeg mob thiab tsev neeg puag nrog lawv tus kab mob. (Muaj ntau tshaj 140 HTCs nyob hauv teb chaws As Mes Lis Kas cdc.gov;
Ntxiv kev them nyiaj yug yuav nrhiav tau los ntawm cov NHF, uas sau ib network ntawm lub xeev chapters uas organize kev thiab kev kawm ntawv thiab yog ib txoj kev zoo kawg thiab txuas nrog cov neeg mob zoo li minded (mus xyuas hemophilia.org). "Yog associated nrog ib tshooj yeej pab txhawb lub zej zog," hais Dr. Valentino.
Lwm yam uas yog integral rau cov neeg mob txhawb network: tsev neeg thiab cov phooj ywg, uas muab tsis yog kev them nyiaj yug tab sis xyaum pab nrog hnub-rau-hnub zov. "Ib txhia peb cov me nyuam kawm ntawv qib siab tau kawm lawv cov phooj ywg yuav infuse, ces piv txwv li nyob rau hauv ib qho kev kub ntxhov, yog hais tias lawv tau ntaus lawv lub taub hau thiab mus unconscious, lawv cov phooj ywg paub yuav ua li cas thiab hu rau 911, etc.," Miller piav txog. "Nws cia li pab cov neeg mob yuav muaj kev sib haum xeeb nrog tus kab mob no."
Chaw nyob txhawj xeeb txog kev ua hauj lwm thiab hauj lwm
Ib txhia neeg xav tias txwv nyob rau hauv lawv txoj hauj lwm xaiv, los yog tias coworkers saib lawv li tsawg dua vim tsis tshua muaj kev kho mob. Rau cov neeg mob no, nws yuav pab tau ib tsab ntawv los ntawm ib tug kws kho mob rau kev muab rau lawv qhov chaw ua hauj lwm. "Nws cia tus tswv hauj lwm to taub tias tus neeg no tsis tau tub nkees- lawv yeej muaj ib tug kab mob uas tej yam uas ua rau lawv," hais Miller, uas muaj kuj muaj xov tooj sib tham nrog cov chaw ua hauj lwm rau cov neeg mob. Cov neeg mob kuj sau cov ntaub ntawv nyob rau hauv tsev neeg thiab kev kho mob tawm hauv Act (FMLA) nyob rau hauv cov kev tshwm sim lawv yuav tsum tau siv sij hawm tawm mus infuse rau ib bleed los yog nyob rau lwm yam teeb meem uas tiv thaiv lawv los ntawm kev ua hauj lwm. Thaum nws tawm los tham rau ib txoj hauj lwm tej hauj lwm, Miller pom zoo kom cov neeg mob paub seb cov kev pab cuam muaj tsis muaj lawm compelled muab lawv tus mob txoj cai tawm ntawm tus puav. "Txoj kev muaj tiag yog lawv yuav tsum paub tseeb tias nws txoj kev npaj kho mob uas yuav npog [lawv kho]," nws hais.
Emphasize qhov tseem ceeb ntawm ib tug cwj pwm zoo
Dr. Valentino hais tias cov neeg mob thrive thaum "lawv chaw nyob lawv tus kab mob thiab puag nws rau ib txhia twg, ntau dua li nkaum ntawm nws." Xwb, kev tshawb fawb txhawb lub tswvyim no: ib txoj kev tshawb no pom tias cov neeg mob uas muaj ib tug xaav zoo xaav ntawm lawv tus kab mob no zoo nyob coping nrog nws. Tsis txhob focusing rau dab tsi tus kab mob no tau noj los ntawm lawv, txhawb cov neeg mob los flip lawv foupective thiab xav txog seb nws ua lawv muaj zog. "Peb muaj lub taub hau ntawm cov neeg uas lawv yuav tsis pauv lawv hemophilia vim nws tau ua rau tus neeg lawv yog," hais Dr. Valentino.
Fostering ib outlook zoo pib thaum cov neeg mob yog cov hluas; Ntau yim neeg koom hauv hemophilia lub caij ntuj sov camps, uas muaj xws li cov kws kho mob pab dawb thiab cov kws tu mob, qhov twg cov me nyuam yaus li 7 yuav tsim tau lawv cov qoob loo thiab ywj siab (rau ib daim ntawv teev camps, mus xyuas hemophilia.org). "Lawv tau dai nrog cov me nyuam uas muaj lub caij nyoog tib yam thiab yuav tsum tau ua ib yam infusions," hais Miller. "Peb hnov los ntawm ntau cov niam txiv uas cov me nyuam rub nws rau lawv cov kwvtij uas lawv muaj hemophilia thiab lawv tau ua kev lom zem tej yam lawv cov kwvtij tsis! Lawv saib lawv tus kab mob ua ib yam dab tsi uas tau qhib tau qhov rooj rau lawv."
