Isici Esibalulekile Sempumelelo Yokutshala Imali Ekuvimbeleni, 'indaba yebhizinisi' enhle nokubalwa ngokucophelela kwezindleko nezinzuzo. Ukukhombisa inzuzo nokwandisa umthelela wokuvimbela, lonke uchungechunge lwababambe iqhaza kumele lubandakanyeke.

Inhloso

I-cholesterol ephezulu ingaba yifa, Umndeni we-hypercholesterolemia (FH) ebizwa. E-Netherlands 1 use 240 abantu lesi simo sofuzo. Lokhu kulinganiselwa ku-approx 70.000 abantu. Ubona i-cholesterol ephezulu kakhulu (ekuqaleni) lutho. Lokhu kusho ukuthi umuntu one-FH ngokuvamile akezi kudokotela ojwayelekile noma uchwepheshe nesicelo sokunakekelwa. Ngokutholwa okusebenzayo kuphela lapho imindeni ye-FH kanye neziguli ze-FH ezingakahlonzwa zingafakwa imephu.

Ukuxilongwa ngesikhathi kanye nokwelashwa kubalulekile ezigulini ezine-FH. Ngaphambi kwalokho 20^{Kepha abaqalisi beGaston Remmers} Eminyakeni yobudala, i-arteriosclerosis eyingozi ingenzeka ngaphandle kokuqaphela. Ngenxa yalokhu kunengozi enkulu kakhulu yenhliziyo- isifo. Ngokuxilonga kusenesikhathi kanye nokwelashwa okufanele, isiguli esimaphakathi se-FH sizuza iminyaka eyishumi nanye yempilo enempilo.

Eminyakeni yamuva nje, amaqembu amaningana enze imizamo yokuthungatha abantu abane-FH. Lokhu kubangele isisekelo se-LEEFH. Namuhla, i-LEEFH Foundation izibophezele ekutholeni iziguli ze-FH kusenesikhathi futhi izazise ngezingozi, ukuxilongwa nokwelashwa, okwenhliziyo- ukuvimbela isifo senhliziyo. I-LEEFH ingathanda futhi ukulandelela ngenkuthalo iziguli ezingaba khona, kodwa amathuba alinganiselwe ekusizeni iziguli ezinenkomba zazise izihlobo zazo.

Indlela

Ku- 1993 i-STOEH yasungulwa (Isisekelo Sokutholwa Kwe-Hereditary Hypercholesterolemia). Lapho unelungu lokuqala lomndeni, ngocwaningo lweDNA, I-FH yatholakala, amalungu omndeni athintwa ngenkuthalo ngophenyo oluhlelekile. Indlela yayifinyeleleka kakhulu. Ngesikhathi sokuvakasha ekhaya, kwanikezwa ulwazi futhi kwathathwa igazi ukuze kuhlolwe i-cholesterol kanye nokuhlolwa kwe-DNA. Ku- 2003 le ndlela 'yaqashelwa' njengokuhlolwa kwabantu ngaphansi kwesibopho se-CVZ (kamuva i-RIVM) futhi ixhaswe ngabakwa-VWS. Kodwa-ke, ukuhlolwa kwabantu kuye kwamiswa ekugcineni 2013. Khona-ke umsebenzi woMnyango Wezempilo, Wenhlalakahle Nezemidlalo wawuhlanganisa ukuthungathwa kwezihlobo ezinakekelwa njalo. Lesi ukuphela 2013 Isisekelo se-LEEFH sisungulwe. I-LEEFH ithatha ukuxhumanisa kukazwelonke kokunakekelwa kwe-FH ngenhloso yoku 40.000 ukuthola abantu abangabonwa.

Kusuka 2014 Ukutholwa kwe-FH kungena ngaphansi 'kokunakekelwa komshwalense'. Ngenxa yalokho, angeke kube khona umbuzo wophenyo olusebenzayo njengoba lwenzeka ngesikhathi sokuhlolwa kwabantu. Lokhu kungenxa yokuthi lokhu akungeni ngaphansi kwezinhlaka ezakhiwe yiNational Health Care Institute. Ilungu lomndeni elisola i-FH kuzodingeka libike umbuzo wokunakekelwa. Ngakho-ke i-LEEFH yakhe inethiwekhi yezikhungo zesifunda ze-FH. Basiza ukukhomba iziguli ukwazisa izihlobo zabo. Lokhu njengomsebenzi owengeziwe ngaphezu kokunquma ukuxilongwa nokwelashwa okufanele.

Imiphumela

Ekuqaleni, ukuhlolwa kwabantu kwabonakala kuyimpumelelo. Memento Amsterdam 2012 kwakucatshangwa ukuthi ukusabalala kwe-FH 1 vula 400 kwaba (40.000 abantu abane-FH eNetherlands). Ngokusekelwe kulezi zibalo, umgomo obekiwe ubonakale ufinyeleleka; ukuxilonga 70%, 28.000 Iziguli ze-FH. Ucwaningo olusha ku 2012 yabonisa, nokho, ukuthi ukusabalala okufanele kwe-FH eNetherlands 1 vula 240 kuyinto. Ngakho-ke iphesenti langempela leziguli ze-FH ezitholwe laliphansi kakhulu (41%). Ngokusekelwe kulolu lwazi olusanda kutholwa, kubonakala kuyisinyathelo esinengqondo ukuqhubeka nokuhlolwa kwabantu. Nokho, ukuqeda lokhu kwase kuphelile 2013 isinqumo esingenakuhlehliswa.

Ngemva kokumiswa kokuhlolwa okusebenzayo, inani leziguli ezibhalisiwe ngonyaka lehle ngo 78%. Iziguli ezingaba khona manje kwase kulula ukuzifinyelela, ngoba umthwalo wokuya ezigulini ezingase zibe khona usemalungwini omndeni. Ku- 2016 U-LEEFH wabe esenquma ukuphinde akhulume nabakwaVWS. Lokhu ngenhloso yokuthola imvume nezisetshenziswa zophenyo olusebenzayo futhi. Ngeshwa, lo mzamo awuzange uphumelele futhi amandla e-LEEFH alinganiselwe ekusizeni iziguli ezikhomba ukwazisa izihlobo zazo.. Umphumela wukuthi namanje 58% yabantu abane-FH abazi ukuthi bayifa futhi bangathola iminyaka eminingana yokuphila enempilo ngokwelashwa okufanele.

Nciphisa

1. Akuzona zonke izinto ezingabonwa kusengaphambili. Uxhaso lumisiwe, kuyilapho isidingo sokuhlolwa kwenani labantu ngenxa yokwanda kwabantu abaningi saba sikhulu kunalokho okwakucatshangwa ngaphambili.
2. Ukuthembela kwelinye izwe ekuxhaseni ngezimali kwenza kube sengozini, ikakhulukazi uma kuziwa emsebenzini 'wokuvimbela'- bese ehamba. Ngeshwa, ukuvikela ngezimali kusenzima ngoba umuntu okhokha izindleko akuyena njalo othola izinzuzo..
3. Kubalulekile ukuqinisa kahle nokubala izinhlelo. Ngesikhathi abakwa-VWS bengqongqoza emnyango, ulwazi oluqondile kanye nezibalo ababezobonisa ngazo isidingo bekungakatholakali.. Ukuphendula lokhu, kwaqalwa icala lebhizinisi ngokubambisana nenkampani yokubonisana iVintura. Leli cala lebhizinisi lizokwenza isisekelo somzamo omusha wokuthola ukutholwa okusebenzayo kweziguli ze-FH.
4. Lapho kudwetshwa udaba lwebhizinisi, kwafika ukuqaphela ukuthi akumele kuqashelwe kuphela uphenyo. Ochungechungeni olufanayo, ukuxilongwa okulungile kanye nokwelashwa okulandelayo nakho kudinga ukunakwa okwanele. Kulapho kuphela lapho ukutshalwa kwezimali okufanele kwenziwe ekuhlolweni kwabantu kufinyelele imbuyiselo ehlosiwe.

Igama: UJanneke Wittekoek noManon Houter
Inhlangano: LEEFH

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