Ingxoxo Yokuzama Isifo Sikashukela: Okuphuthele

-Delile

• 1. Eminyakeni eyishumi edlule, ucwaningo lwesifo sikashukela luguqule kanjani izimpilo zeziguli?
• Kusuka emphakathini wethu:
• 2. Iyiphi indima edlalwa yiziguli ocwaningweni lwezempilo lwesifo sikashukela? Iyiphi indima okufanele bayidlale?
• Kusuka emphakathini wethu:
• 3. Singaxhumana kanjani kangcono nenkinga yokuntuleka kokubamba iqhaza kwesivivinyo somtholampilo neziguli?
• Kusuka emphakathini wethu:
• 4. Ngabe ucabanga ukuthi yiziphi izithiyo ezivame kakhulu ekubambeni iqhaza kwecala lomtholampilo? Kungabhekwana kanjani nazo?
• Kusuka emphakathini wethu:
• 5. Sikwenza kanjani ukuthi ukuhlolwa kwemitholampilo kugxile kakhulu ezidingweni zeziguli?
• Kusuka emphakathini wethu:
• 6. Ngingathola kanjani ukuthi yiziphi izivivinyo zokwelashwa okufanele ngibambe iqhaza kuzo?
• 7. Yiziphi izinsiza ozincomayo ukuze ufunde kabanzi mayelana nokuhlolwa kwemitholampilo?
• 8. Yikuphi ukuthuthuka okungaba khona kwesifo sikashukela okujabulisa kakhulu kuwe?
• Kusuka emphakathini wethu:
• 9. Ucabanga ukuthi siseduze kangakanani ikhambi lesifo sikashukela?
• Kusuka emphakathini wethu:
• 10. Yini into eyodwa ofisa ukuthi iziguli zazi mayelana nokuhlolwa kwemitholampilo?
• Kusuka emphakathini wethu:
• 11. Iyiphi insumansumane enkulu mayelana nokuhlolwa kwemitholampilo?
• Kusuka emphakathini wethu:

NgoJanuwari, uHealthline wabamba ingxoxo ye-Twitter (#DiabetesTrialChat) ukukhuluma ngezinselelo ezibhekene nabantu abane-type 1 yesifo sikashukela 'ekufinyeleleni ekuhlolweni kwemitholampilo okuhloswe ngayo ukuthola ukwelashwa okusha, futhi okungenzeka kube ikhambi. Ababambe iqhaza engxoxweni babe:

• USara Kerruish, iqhinga eliyinhloko kanye nesikhulu sokukhula e-Antidote. (Landela bona @Antidote)
• U-Amy Tenderich, umsunguli nomhleli oyinhloko we-DiabetesMine. (Landela bona @ DiabetesMine)
• UDkt Sanjoy Dutta, umsizi wesekela likamongameli wezentuthuko yokuhumusha e-JDRF. (Landela bona @JDRF)

Qhubeka ufunde ukuze ubone ukuthi yiziphi izinkinga, kanye nezisombululo ezingaba khona, bona nomphakathi wethu omuhle abazibonile!

1. Eminyakeni eyishumi edlule, ucwaningo lwesifo sikashukela luguqule kanjani izimpilo zeziguli?

UDkt Sanjoy Dutta: "Ukwanda kokuqwashisa, ukwehla komthwalo, ukubuyiselwa kwemali yokuqapha i-glucose okuqhubekayo (CGM), imiphumela engcono kusetshenziswa amadivayisi, nokuxilongwa kwangaphambilini."

USara Kerruish: “Kushintshe konke. Ukusuka ekutshintshelweni kwesiqhingi kuya endaweni okungenzeka kube amanyikwe - inqubekela phambili enkulu seyenziwe… Ngithande le ndatshana evela kwi-American Diabetes Association ngayo yonke inqubekela phambili eyenziwe eminyakeni engama-50 edlule. ”

U-Amy Tendrich: "Ucwaningo lusinikeze i-CGM kanye ne-pancre yokufakelwa kungekudala, kanye ne-Antidote yokufunda ngezimbangela zesifo sikashukela - okumangazayo!"

Kusuka emphakathini wethu:

@everydayupsdwns: “Kunamagajethi amaningi amasha nemixube ongamamatheka ngayo ku-T1D… Ukwelashwa kwepampu okwenziwe inzwa kuvela engqondweni. Ama-insulin analogue asize abaningi, kepha i-smart insulin ibukeka iyamangaza ”

@ ninjabetic1: "Ukubona ukuthi ucwaningo lwesifo sikashukela luphezulu ku-ajenda kunginikeza ithemba lokuthi ngizoba nempilo ejabulisayo nenempilo"

@JDRFQUEEN: “Inguquko engaka. Ngiqale ngagqoka i-Guardian Medtronic CGM ngo-2007. Bekukubi, kungu-100-200 pts off. Manje i-AP iyifanele. ”

2. Iyiphi indima edlalwa yiziguli ocwaningweni lwezempilo lwesifo sikashukela? Iyiphi indima okufanele bayidlale?

AT: “Iziguli kufanele zibe nengxenye enkulu ekucabangeni ngezifundo! Bheka iVitalCrowd entsha. Bheka amaslayidi okwethulwa ka-Anna McCollisterSlip kuVitalCrowd ekusetshenzisweni kwezidakamizwa zesifo sikashukela lapha. ”

I-SD: "Iziguli kufanele futhi zidlale indima ebonakalayo ekuhlinzekeni umbono kanye nempendulo ekwakhiweni kwecala nemiphumela."

SK: “Yebo! Ukuthonywa komklamo kubalulekile! Kufanele badlale indima enkulu! Iziguli zingazichaza kahle izidingo zazo, ngakho-ke abacwaningi kufanele balalele ngokucophelela. ”

Kusuka emphakathini wethu:

@ AtiyaHasan05: “Ukwethembeka. Ukuthembeka kulokho abayikho nabangakwenzi ngokulandela imigomo yocwaningo. ”

@ ninjabetic1: "Ngicabanga ukuthi iziguli zigcina ucwaningo lwesifo sikashukela ezinzwaneni [zalo] (ngendlela enhle!) - Imiklamo #wearenotwaiting iwubufakazi balokho"

@JDRFQUEEN: "I-Clinicaltrials.gov [iyindawo] yokuqala kulabo abafuna ukuzibandakanya ocwaningweni!"

3. Singaxhumana kanjani kangcono nenkinga yokuntuleka kokubamba iqhaza kwesivivinyo somtholampilo neziguli?

AT: "Insizakalo yokuqondanisa iziguli zikashukela nabacwaningi, njengeLiving BioBank."

SK: “Imfundo! Senza konke okusemandleni ukusabalalisa igama - iziguli ezingama-500,000 ziyadingeka ekuhlolweni kwesifo sikashukela e-U.S., Kepha amaphesenti angama-85 ezilingo abambezelekile noma ahluleka ngenxa yezinkinga zokubhalisa. Lezi yizindaba ezimbi ezigulini nakubacwaningi. ”

I-SD: “Sidinga ukungabi nabandlululi ngokubaluleka kwesiguli ngasinye. Bangamanxusa alezi zivivinyo nokuhle kakhulu kubo bonke abaphila nohlobo 1 lwesifo sikashukela. Ukubamba iqhaza okucacisiwe kubalulekile! Musa ukuletha isiguli ezilingweni; siletha izilingo esigulini. ”

SK: “YEBO!”

Kusuka emphakathini wethu:

@ ninjabetic1: “Cela ama-HCP ukuthi abelane ngalolu lwazi kangcono neziguli ezifanele. Ucwaningo akukaze kukhulunywe ngalo kimi eminyakeni engu-13.5! ”

@ AtiyaHasan05: “Bachaza [inqubo] ephelele nendima yabo ebalulekile kuyo. Iningi aliqondi kahle ukuthi izivivinyo zisebenza kanjani. "

@everydayupsdwns: “Bopha amandla ezinkundla zokuxhumana! … Izifundo eziningi ziyahlupheka njengoba [zilinganiselwe] ngokwendawo. ”

4. Ngabe ucabanga ukuthi yiziphi izithiyo ezivame kakhulu ekubambeni iqhaza kwecala lomtholampilo? Kungabhekwana kanjani nazo?

SK: “Finyelela! Imininingwane ekhona lapho yenzelwe abacwaningi, hhayi iziguli - yingakho sidale iMatch. Sidinga ukubeka iziguli maphakathi nocwaningo. Yini ebalulekile kubo? UDave deBronkart usifundisile lokhu. ”

AT: “Abantu bavame ukusithumelela i-Diabetes Mine bebuza ukuthi bona noma izingane ezinesifo sikashukela sohlobo 1 zingazibandakanya kanjani ezivivinyweni. Kukuphi okungcono kakhulu ukubathumela? Inkinga ukuthi iClinicaltrials.gov inzima KAKHULU ukuzulazula. ”

I-SD: “Ukubamba iqhaza okuqondile nokungaqondile kubalulekile, kanye nokuxhumana okuvulelekile. I-ecosystem esekelayo yabanakekeli nama-HCPs. Kungabakhona ukuthembana kwezilingo. Yabelana ngesithombe esikhudlwana bese usuka esilingweni usiya kusiguli-centricity.

AT: “Umqondo omuhle lowo! Ungaphakamisa kanjani ukuthi bakwenze lokho? ”

I-SD: “Izilingo ZISEKELWE ekufakweni kweziguli. Yini engenza uhlobo lwabo lwesifo sikashukela silawuleke? Yini abayithandayo nabalinganiselwe? ”

SK: “Kulula. Imininingwane nokufinyelela. Iningi labantu alazi ngezivivinyo zomtholampilo. Sizama ukulungisa lokhu. "

Kusuka emphakathini wethu:

@davidcragg: "Okubalulekile kimina ukubona ukuzibophezela ekutheni izindlela eziphelele nemiphumela kuzobikwa kungakhathalekile imiphumela."

@gwsuperfan: “Izilingo eziningi ezizobamba iqhaza zingakhuphula iqhaza. Omunye ubefuna ngihlale esikhungweni isikhathi esingaphezu kwamasonto amabili… Akuyona into engelutho kubantu abanesifo sikashukela abanemisebenzi / isikole / izimpilo. ”

@everydayupsdwns: “Kuncike ekwakhiweni kwecala. Kungaba yinoma yiziphi izinto… ngiye nganikela ngokubamba iqhaza izikhathi eziningana, futhi ngabhalisela ukuthi 'ngitholwe' kodwa ngathola kuphela umtholampilo wami. ”

@lawahlstorm: “Ukunqoba imibono eyiphutha mayelana nokubamba iqhaza kwezilingo. Umgunyathi “wengulube yeginea”. ”

@ ninjabetic1: “Isikhathi: Ngidinga ukuzibophezela isikhathi esingakanani? Imiphumela: sizoyibona imiphumela? Okudingekayo: ufunani kimi? ”

5. Sikwenza kanjani ukuthi ukuhlolwa kwemitholampilo kugxile kakhulu ezidingweni zeziguli?

I-SD: "Nciphisa ubunzima bokwenza okulandelwayo, futhi neziguli ezithile ezifunwayo kufanele zakhiwe lapho kucatshangelwa ukwakhiwa komkhiqizo."

SK: “Dizayina ucabanga ngeziguli! Abaphenyi kufanele bacabange njengeziguli futhi baqinisekise ukuthi kulula ukubamba iqhaza esivivinyweni. Futhi ungesabi ukubuza! Iziguli ziyakwazi okulungele iziguli, futhi abacwaningi kufanele bakusebenzise lokho. ”

AT: "Futhi, sidinga okuthile okufana ne-Diabetes Research Connection ukulandelela ukuthi isivivinyo sakho sifezani."

Kusuka emphakathini wethu:

@lwahlstrom: “Bandakanya iziguli kuzona zonke izigaba zokwakhiwa kwesivivinyo - ngale 'kokuhlolwa kokuhlolwa.' Ukufakwa komphakathi kubalulekile!"

@ ninjabetic1: “Qhuba izingxoxo eziningi ze-tweet kanjena. Gxila amaqembu. Funda amabhulogi. Khuluma nathi. Dlula ama-HCPs ukufinyelela iziguli ”

@JDRFQUEEN: "Futhi hhayi ukuthi umuntu udinga ukukhokhelwa izindodla zemali, kodwa ukubuyiselwa kwemali nesikhathi kanye negesi kuyisikhuthazo esikhulu kulabo ababambe iqhaza."

6. Ngingathola kanjani ukuthi yiziphi izivivinyo zokwelashwa okufanele ngibambe iqhaza kuzo?

I-SD: "Inhlanganisela yocwaningo lomuntu siqu kanye negalelo lomhlinzeki wakho wezokunakekelwa kwempilo."

SK: "Bheka ithuluzi lethu elisha - phendula imibuzo embalwa bese uhlelo lwethu luzokutholela izilingo!"

7. Yiziphi izinsiza ozincomayo ukuze ufunde kabanzi mayelana nokuhlolwa kwemitholampilo?

I-SD: "I-Clinicaltrials.gov, kanye ne-JRDF.org"

SK: “Abangane bethu i-CISCRP banikela ngezinsizakusebenza ezinhle. Futhi umphakathi oku-inthanethi onesifo sikashukela uyindlela enhle yokufunda ngokuhlangenwe nakho komuntu siqu. ”

8. Yikuphi ukuthuthuka okungaba khona kwesifo sikashukela okujabulisa kakhulu kuwe?

SK: "Okuningi! Ngithakazeliswa kakhulu ama-pancre okufakelwa - cabanga ukuthi zingaki izimpilo ezizoshintshwa. Nginentshisekelo futhi ocwaningweni olusha lokuguqula amangqamuzana ama-stem abe amaseli e-beta e-pancreatic - kuzwakala kuyinqubekela phambili enkulu! ”

AT: “Ngokuzimisela. Iziguli nabahlinzeki okwaxoxwa nabo ngendaba [yethu] yesifo sikashukela nensangu bathi KUDINGEKA IZIFUNDO. Sijabule ngezifundo ezizovumela i-CGM ukuthi ithathe indawo yezinduku zeminwe. "

I-SD: "Izinhlelo zokufakelwa kwamanyikwe, ama-beta cell replacement (encapsulation), izifo zesifo sezinso ...

SK: "Izilingo ezimbili ezinkulu, ezithembisayo zepancreas eza ngo-2016 ngeHarvard Research ne-UVA School of Medicine."

Kusuka emphakathini wethu:

@OceanTragic: "I-OpenAPS impela"

@ NanoBanano24: “I-AP ibukeka isondele impela! Ngijabule kakhulu ngalokho. ”

9. Ucabanga ukuthi siseduze kangakanani ikhambi lesifo sikashukela?

SK: "Angazi ukuthi kusondele kangakanani, kodwa izolo nje, lezi zindaba zinginike ithemba."

Kusuka emphakathini wethu:

@delphinecraig: "Ngicabanga ukuthi luselude ukhalo okusamele siluthole ekwelashweni."

@davidcragg: “Hhayi empilweni yami. Inqwaba yabezindaba mayelana nokwelashwa ekhoneni imayelana nokuthola imali yocwaningo ”

@Mrs_Nichola_D: "Iminyaka eyi-10? Ukuhlekisa eceleni, angazi ngempela. Kodwa hhayi ngokushesha ngendlela engifisa ngayo. ”

@ NanoBanano24: “Kusondele kakhulu kunanini ngaphambili! Ngineminyaka engama-28, anginasiqiniseko sokuthi kusesikhathini sami sokuphila. I-AP enhle ingaba phakathi neminyaka eyi-10. Ithemba eliqaphile. ”

@sibusisiwe: “Utshelwe iminyaka engama-38 ukuthi [isifo sikashukela] sizokwelashwa eminyakeni emihlanu kuya kweyishumi. Ngidinga imiphumela hhayi ukuqagela ”

10. Yini into eyodwa ofisa ukuthi iziguli zazi mayelana nokuhlolwa kwemitholampilo?

I-SD: "Ngifisa sengathi iziguli zazi ukuthi zibaluleke kangakanani… Iziguli zingabadlali nabaqondisi bendlela ezuzisa kakhulu labo abaphila nesifo sikashukela sohlobo 1."

SK: “Imvamisa, ngifaka imibuzo mayelana nokuthola izivivinyo - iziguli ziza kithina lapho zibambekile, futhi sizisiza ukuthola isivivinyo. Sineqembu elimangalisayo elingakusiza ekutholeni isilingo sikashukela. Sibala zonke izilingo, ngakho-ke akukho ukukhetha. ”

Kusuka emphakathini wethu:

@lwahlstrom: “U-80% ubhalisiwe ukuvimbela intuthuko ebalulekile futhi bonke ababambiqhaza bathola iminithi. ukwelashwa okujwayelekile. ”

11. Iyiphi insumansumane enkulu mayelana nokuhlolwa kwemitholampilo?

AT: “Ngingathi inganekwane enkulu kunazo zonke ukuthi izivivinyo zesifo sikashukela zivulekele kuphela‘ abaphezulu ’futhi azifinyeleleki kubo bonke. Kumele sisakaze izwi! ”

I-SD: “Ukuthola ukulinganisela okunempilo ngokuthi yiziphi izilingo zomtholampilo futhi ezingekho kubalulekile. Amanye ama-cynics anomuzwa wokuthi iziguli zilingana nezilwane zaselebhu. Lokho akulona iqiniso. Izazi zingase zibe nomuzwa wokuthi zonke izilingo zilingana nokwelashwa. Lokho futhi akulona iqiniso. Ukulinganisela isayensi, okulindelwe nethemba yilokho okwenziwa izivivinyo zokwelashwa. ”

Kusuka emphakathini wethu:

@davidcragg: "Inganekwane enkulu kunazo zonke ukuthi konke ukuhlolwa kuklanywe kahle futhi nemininingwane ishicilelwa njalo -abaningi abakaze bashicilele okwenza okokufaka kungabaluleki kangako… iziguli zidinga ukuzwa ukuthi akusikho ukuphawula kepha yingxenye eyinhloko yenqubo abanethonya kuyo (kusukela ekuqaleni)"

@delphinecraig: “Ngicabanga ukuthi izinganekwane zifaka phakathi. asikho isinxephezelo, ukungakhululeki ngezidakamizwa / imitholampilo / odokotela, kubiza lowo obambe iqhaza. ”

@JDRFQUEEN: “’ Ukuthumela ’imiphumela. Uhlala njalo unelungelo lokuhoxa uma abaphathi bakho behlupheka. ”

Ngibonga wonke umuntu obambe iqhaza! Ukuthola ngemicimbi ezayo ku-Twitter, silandele @NomzamoMbatha!