Ingxoxo yesifo seswekile: Into oyiphosileyo

Umxholo

• 1. Kule minyaka ilishumi idlulileyo, uphando lweswekile lubutshintshe njani ubomi bezigulana?
• Ukusuka kuluntu lwethu:
• 2. Iyiphi indima edlalwa zizigulana kuphando lwesifo seswekile? Bafanele badlale eyiphi indima?
• Ukusuka kuluntu lwethu:
• 3. Singayithetha njani ngcono ingxaki yokunqongophala kokuthatha inxaxheba kwetyala kwizigulana?
• Ukusuka kuluntu lwethu:
• 4. Ucinga ukuba zeziphi ezona zithintelo zixhomekeke ekuthatheni inxaxheba kwetyala lonyango? Banokulungiswa njani?
• Ukusuka kuluntu lwethu:
• 5. Senza njani ukuba uvavanyo lwezonyango lujolise ngakumbi kwiimfuno zezigulana?
• Ukusuka kuluntu lwethu:
• 6. Ndingafumanisa njani ukuba zeziphi iimvavanyo zeklinikhi ekufuneka zithathe inxaxheba kuzo?
• 7. Zeziphi izixhobo ocebisa ukuba ufunde ngakumbi ngezilingo zeklinikhi?
• 8. Yeyiphi inkqubela phambili enokwenzeka kunyango lweswekile enomdla kakhulu kuwe?
• Ukusuka kuluntu lwethu:
• 9. Ucinga ukuba sikufutshane kangakanani kunyango lwesifo seswekile?
• Ukusuka kuluntu lwethu:
• 10. Yeyiphi enye into onqwenela ukuba izigulana ziyazi malunga nolingo lwezonyango?
• Ukusuka kuluntu lwethu:
• 11. Yeyiphi eyona ntsomi inkulu malunga nolingo lwezonyango?
• Ukusuka kuluntu lwethu:

NgoJanuwari, u-Healthline wabamba ingxoxo ye-Twitter (# Isifo seswekileTrialChat) ukuthetha ngemiceli mngeni ejongene nabantu abanoluhlobo lwesifo seswekile sokufikelela kwizilingo zeklinikhi ezijolise ekufumaneni unyango olutsha, kunye nonyango olunokubakho. Ukuthatha inxaxheba kwincoko kwaba:

• USara Kerruish, iqhinga eliyintloko kunye negosa lokukhula e-Antidote. (Landela bona @Antidote)
• UAmy Tenderich, Umsunguli kunye nomhleli oyintloko weSwekileMine. (Landela bona @ DiabetesMine)
• UGqr Sanjoy Dutta, usekela-mongameli wophuhliso lwenguqulelo eJDRF (Landela bona @JDRF)

Funda ukuze ubone ukuba zeziphi iingxaki, kunye nezisombululo ezinokubakho, bona kunye noluntu lwethu oluhle oluchongiweyo!

1. Kule minyaka ilishumi idlulileyo, uphando lweswekile lubutshintshe njani ubomi bezigulana?

UGqr Sanjoy Dutta: "Ukwanda kolwazi, ukwehla komthwalo, ukubuyiselwa kwenkqubo yokubeka esweni iswekile (CGM), iziphumo ezingcono zisebenzisa izixhobo, kunye nonyango lwangaphambili."

USara Kerruish: Itshintshe yonke into. Ukusuka kwisiqhushumbisi kufakelwa inwebu engeyonyani enokwenzeka - kwenziwe inkqubela phambili enkulu… Ndilithandile eli nqaku lisuka kuMbutho weSifo seSwekile waseMelika ngayo yonke inkqubela phambili eyenziweyo kule minyaka ingama-50 idlulileyo. ”

UAmy Tendrich: "Uphando lusinike i-CGM kwaye kungekudala iipancreas ezingezizo, kunye ne-Antidote yokufunda ngezizathu zesifo seswekile- okumangalisayo!"

Ukusuka kuluntu lwethu:

@everydayupsdwns: “Zininzi izixhobo ezitsha kunye nemixube yokuncuma malunga ne-T1D…. Iimpawu ze-insulin zincedile abaninzi, kodwa i-insulin ebukekayo ikhangeleka iyamangalisa ”

@ ninjabetic1: "Ukubona ukuba uphando lweswekile luphezulu kwi-ajenda kundinika ithemba lokuba ndiza kuba nobomi obonwabileyo nobusempilweni"

@JDRFQUEEN: “Lukhulu utshintsho. Ndaqala ukunxiba i-Guardian Medtronic CGM ngonyaka ka-2007. Kwakubuhlungu, 100-200 pts off. Ngoku iApp ifanelekile. ”

2. Iyiphi indima edlalwa zizigulana kuphando lwesifo seswekile? Bafanele badlale eyiphi indima?

I-AT: “Abaguli kufanelekile ukuba babandakanyeke kakhulu ekuqondeni izifundo! Jonga iVitalCrowd entsha. Bona Anna McCollisterSlip ukwazisa izilayidi kwiVitalCrowd ukuhanjiswa kwabantu kwizifo zesifo seswekile apha. ”

SD: "Abaguli kufuneka badlale indima ebonakalayo ekunikezeleni umbono kunye nengxelo kuyilo kunye neziphumo zelingo."

SK: "Ewe! Uyilo lwefuthe lubalulekile! Kuya kufuneka badlale indima enkulu! Abaguli bangazichaza kakuhle ezona mfuno zabo, ke abaphandi kufuneka baphulaphule ngenyameko. ”

Ukusuka kuluntu lwethu:

@ AtiyaHasan05: “Ukunyaniseka. Ukunyaniseka malunga noko bakuko kwaye bangenzi ngokwemigaqo yophando. ”

@ ninjabetic1: "Ndicinga ukuba abaguli baqhubeka nophando lweswekile kwizwane [zabo] (ngendlela elungileyo!) - Iiprojekthi #ezingasalindiyo bubungqina bokuba"

@JDRFQUEEN: "I-Clinicaltrials.gov [sisiqalo] esihle kwabo bafuna ukubandakanyeka kuphando!"

3. Singayithetha njani ngcono ingxaki yokunqongophala kokuthatha inxaxheba kwetyala kwizigulana?

I-AT: "Inkonzo yokutshatisa kwizigulana ezineswekile kunye nabaphandi, njengeLiving BioBank."

SK: “Imfundo! Senza konke okusemandleni ethu ukusasaza igama - izigulana ezingama-500,000 ziyafuneka kwizilingo zeswekile e-U.S, kodwa iipesenti ezingama-85 zezilingo zilibazisekile okanye zisilele ngenxa yemicimbi yobhaliso. Ziindaba ezimbi ezi kwizigulana nakubaphandi. "

SD: “Kufuneka singaqiniseki ngokubaluleka kwesigulana ngasinye. Bangoonozakuzaku bezilingo kunye nokulunga okukhulu kubo bonke abaphila nohlobo 1 lweswekile. Ukuthatha inxaxheba ngokulula kubalulekile! Musa ukuzisa isiguli kwizilingo; kuzisa izilingo kumguli. ”

SK: "EWE!"

Ukusuka kuluntu lwethu:

@ ninjabetic1: “Buza ii-HCPs ukuba zabelane ngolu lwazi ngcono nezigulana ezifanelekileyo. Uphando aluzange lukhankanywe kum kwiminyaka eyi-13.5! ”

@ AtiyaHasan05: “Bachaza inkqubo epheleleyo nendima yabo ebalulekileyo kuyo. Uninzi aluyiqondi ngokupheleleyo indlela ezisebenza ngayo izilingo. "

@everydayupsdwns: “Bopha amandla eendaba zosasazo! … Izifundo ezininzi ziyasokola njengoko [zisikelwe umda] ngokwendawo. ”

4. Ucinga ukuba zeziphi ezona zithintelo zixhomekeke ekuthatheni inxaxheba kwetyala lonyango? Banokulungiswa njani?

SK: “Fikelela! Ulwazi oluphandle lukhona lwabaphandi, hayi abaguli- yiyo loo nto sidale umdlalo. Kufuneka sibeke izigulana kwiziko lophando. Yintoni ebalulekileyo kubo? UDave deBronkart usifundisile oku. ”

I-AT: “Abantu bahlala besithumela i-imeyile kuMgodi weSwekile bebuza ukuba bona okanye abantwana abanesifo seswekile abanokuzibandakanya njani nezilingo. Yeyiphi eyona ilungileyo yokubathumela? Ingxaki kukuba iClinicaltrials.gov KUNZIMA kakhulu ukuhamba. ”

SD: Ukuthatha inxaxheba ngokuthe ngqo nangokungathanga ngqo kubalulekile, kunye nonxibelelwano oluvulekileyo. Inkqubo yendalo exhasayo yabanonopheli kunye ne-HCPs. Kunokubakho ukungathembani kwezilingo. Yabelana ngomfanekiso omkhulu kwaye uhambe ukusuka kulingo-lwesiseko ukuya kwisigulana.

I-AT: "Ingcinga entle! Ungacebisa ukuba bangayenza njani loo nto? ”

SD: “Izilingo ZISEKELWE kwigalelo lezigulana. Yintoni enokwenza ukuba uhlobo lwabo lweswekile lube nokulawulwa? Zeziphi izinto abazithandayo nezisikelwe umda? ”

SK: “Yinto elula. Ulwazi kunye nokufikelela. Uninzi lwabantu alwazi malunga novavanyo lweklinikhi. Sizama ukuyilungisa le nto. "

Ukusuka kuluntu lwethu:

@davidcragg: Into ebalulekileyo kum kukubona ukuzibophelela kwiindlela ezizeleyo kunye neziphumo eziza kuxelwa ngaphandle kwesiphumo.

@gwsuperfan: Uvavanyo oluninzi olunokuthatha inxaxheba luya kwandisa ukuthatha inxaxheba. Omnye wayefuna ukuba ndihlale kwiziko [iiveki ezimbini]… Hayi into enokwenzeka kubantu [abanesifo seswekile] abanemisebenzi / isikolo / ubomi. ”

@everydayupsdwns: Kuxhomekeke kuyilo lolingo. Kungaba naliphi na inani lezinto… ndinikezele ngokuthatha inxaxheba amatyeli aliqela, ndasayinela ukuba 'ndifumaneke' kodwa ndaye ndaphinda ndafunyanwa yikliniki yam. "

@lawahlstorm: “Ukoyisa iimbono ezingezizo malunga nokuthatha inxaxheba kwetyala. "Iguinea guinea" ebubuxoki. "

@ ninjabetic1: “Ixesha: Kufuneka ndizinikele ixesha elingakanani? Iziphumo: ngaba siza kubona iziphumo? Izinto ezifunekayo: ufuna ntoni kum? ”

5. Senza njani ukuba uvavanyo lwezonyango lujolise ngakumbi kwiimfuno zezigulana?

SD: "Nciphisa ubunzima benkqubo, kwaye isigulana esithile sifuna ukuba sakhiwe xa kuthathelwa ingqalelo uphuhliso lwemveliso."

SK: “Yila izigulana engqondweni! Abaphandi kufuneka bacinge njengezigulana kwaye baqiniseke ukuba kulula ukuthatha inxaxheba kuvavanyo. Kwaye ungoyiki ukubuza! Izigulana ziyayazi eyona nto ilungele izigulana, kwaye abaphandi kufuneka basebenzise oko. "

I-AT: "Kwaye sidinga into enje ngoQhakamshelwano loPhando ngeSwekile ukujonga ukuba luyintoni na ulingo lwakho."

Ukusuka kuluntu lwethu:

@lwahlstrom: "Bandakanya abaguli kuwo onke amabakala oyilo lolingo-ngaphaya 'kovavanyo lokuvavanywa.' Igalelo loluntu ngundoqo!"

@ ninjabetic1: “Qhuba ezinye izingxoxo ze-tweet ngolu hlobo. Amaqela ekugxilwe kuwo. Funda iibhloko. Thetha nathi. Dlula kwii-HCPs ukufikelela kwizigulana ”

@JDRFQUEEN: "Kwaye ayisiyomfuneko ukuba umntu ahlawulwe imali eninzi, kodwa ukubuyiselwa kwexesha kunye negesi kuyinkuthazo enkulu kubathathi-nxaxheba."

6. Ndingafumanisa njani ukuba zeziphi iimvavanyo zeklinikhi ekufuneka zithathe inxaxheba kuzo?

SD: "Udibaniso lophando lomntu kunye negalelo lomboneleli wakho wezempilo."

SK: "Jonga isixhobo sethu esitsha - phendula imibuzo embalwa kwaye inkqubo yethu iyakufumana izilingo!"

7. Zeziphi izixhobo ocebisa ukuba ufunde ngakumbi ngezilingo zeklinikhi?

SD: "Clinicaltrials.gov, kunye neJRDF.org"

SK: “Abahlobo bethu i-CISCRP banikezela ngezixhobo ezintle. Kwaye indawo enesifo seswekile kwi-intanethi yindlela elungileyo yokufunda ngamava akho. ”

8. Yeyiphi inkqubela phambili enokwenzeka kunyango lweswekile enomdla kakhulu kuwe?

SK: "Ezininzi kakhulu! Ndinomdla kakhulu kwiipancreas ezingezizo - cinga ukuba bangaphi ubomi obunokuthi butshintshwe. Ndinomdla kuphando olutsha malunga nokuguqula iiseli zeziqu zibe ziiseli zepancreatic beta - ndiziva ngathi yinkqubela phambili enkulu! ”

I-AT: Ngokukrakra. Izigulana kunye nababoneleli ekwenziwe udliwanondlebe nenqaku [lethu] leswekile kunye nentsangu bathi KUFUNEKA IZIFUNDO. Siyavuya ngezifundo eziya kuthi zivumele i-CGM ukuba ithathe indawo yeminwe. ”

SD: "Iinkqubo ezenzekelayo zepancreas, ukutshintshwa kweseli ye-beta (encapsulation), izilingo zesifo sezintso… Amayeza amatsha olawulo lwe-glucose engcono, izilingo zokugcina i-beta cell function."

SK: "Izilingo ezimbini ezinkulu, ezithembisayo zepancreas eziza kuza ngo-2016 ngophando lweHarvard kunye ne-UVA School of Medicine."

Ukusuka kuluntu lwethu:

@ Ocean Ocean: "I-OpenAPS ngokuqinisekileyo"

@ NanoBanano24: “I-AP ibonakala isondele ngokwenene! Ndonwabile kakhulu ngaloo nto. ”

9. Ucinga ukuba sikufutshane kangakanani kunyango lwesifo seswekile?

SK: "Andazi ukuba kufutshane kangakanani, kodwa izolo nje, ezi ndaba zindinike ithemba."

Ukusuka kuluntu lwethu:

@delphinecraig: "Ndicinga ukuba luselude uhambo lokuya kunyango."

@davidcragg: “Hayi ebomini bam. Uninzi lwamajelo eendaba malunga nokunyanga kwikona emalunga nokufumana inkxaso-mali yophando ”

@Mrs_Nichola_D: "Iminyaka eli-10? Ukuqhula ecaleni, andazi ngenene. Kodwa ungakhawulezi ngendlela endifuna ngayo. "

@ NanoBanano24: “Kufutshane kunangaphambili! Ndineminyaka engama-28, andiqinisekanga ukuba ikubomi bam. I-AP entle inokuba phakathi kweminyaka eli-10. Ithemba elilumkileyo. ”

@diabetesalish: “Uxelelwe i-38yrs ukuba [isifo seswekile] siyakuphiliswa kwiminyaka emi-5 ukuya kweli-10. Ndifuna iziphumo hayi uqikelelo ”

10. Yeyiphi enye into onqwenela ukuba izigulana ziyazi malunga nolingo lwezonyango?

SD: "Ndinqwenela ukuba izigulana ziyazi indlela ezibaluleke ngayo… Izigulana ziyabadlali kwaye zilawule indlela eya kwinzuzo enkulu kwabo baphila nohlobo 1 lweswekile."

SK: Rhoqo, ndiye ndizibuze imibuzo malunga nokufumana izilingo- izigulana ziza kuthi xa zibambekile, kwaye siyazinceda ukuba zifumane ityala. Sineqela elimangalisayo elinokukunceda ufumane isilingo seswekile. Sidwelise zonke izilingo, ke akukho lucalucalulo. ”

Ukusuka kuluntu lwethu:

@lwahlstrom: “Iipesenti ezingama-80 zibhalisiwe ukuthintela impumelelo ebalulekileyo kwaye bonke abathathi-nxaxheba bafumana imin. unyango olusemgangathweni. ”

11. Yeyiphi eyona ntsomi inkulu malunga nolingo lwezonyango?

I-AT: “Ndingathi eyona ntsomi inkulu kukuba izilingo zeswekile zivuleleke kuphela‘ kubantu abakumgangatho ophezulu ’kwaye azifikeleleki kubo bonke. Kufuneka silisasaze eli lizwi! ”

SD: “Kukufumana ulungelelwaniso olusempilweni malunga nokuba zeziphi na izilingo zeklinikhi kwaye ezingezizo. Abanye abagxeki bavakalelwa kukuba abaguli balingana nezilwanyana zaselabhoratri. Yinyani leyo. Iingcamango zinokuvakalelwa kukuba zonke izilingo zilingana nonyango. Oko akuyonyaniso kwakhona. Ukulungelelanisa isayensi, okulindelweyo kunye nethemba zizinto ezenziwa kuvavanyo lwezonyango. ”

Ukusuka kuluntu lwethu:

@davidcragg: "Intsomi enkulu kukuba zonke izilingo zenziwe kakuhle kwaye idatha ihlala ipapashwa -abaninzi abaze bapapashe ukwenza igalelo lixabiseke kancinci… izigulana zifuna ukuziva ukuba ayisiyo ithokheni kodwa yinxalenye yenkqubo abanempembelelo kuyo (kwasekuqaleni)"

@delphinecraig: “Ndicinga ukuba iintsomi zibandakanya. akukho mbuyekezo, ukungonwabi ngamayeza / kwiikliniki / kwiiklinikhi, indleko kulowo uthatha inxaxheba. ”

@JDRFQUEEN: "'Ukuthumela' iziphumo. Uhlala unelungelo lokurhoxa ukuba abaphathi bakho bayasokola. ”

Enkosi kubo bonke abathathe inxaxheba! Ukufumana malunga neziganeko ezizayo kwi-Twitter, silandele @Zezempilo!