Ndiyaqonda ukuba kunzima kwaye kuyoyikisa kangakanani xa ugqirha wakho ekuxelela ukuba umntwana wakho une-Duchenne muscular dystrophy (DMD). Esi sisifo semfuza esichaphazela kakhulu abafana kwaye siyenza buthathaka kancinci kancinci imisipha yabo. Iimpawu zihlala zibonakala ebuntwaneni. Akukho nyango lupheleleyo lwe-DMD okwangoku. Kodwa ungakhathazeki. Isayensi yezonyango iyaqhubeka imihla ngemihla. Ngaloo nkqubela phambili, ithemba elitsha leli yeza litsha elibizwa ngokuba yiDuvyzat. Masithethe ngalo ngokulula.
Yintoni iDuvyzat? Isebenza njani?
Ngamafutshane, izihlunu zethu zifuna ukugcinwa rhoqo ukuze zihlale zomelele. Cinga ngezihlunu emzimbeni wethu njengodonga lwezitena. Ukuze olu donga luhlale lomelele kwaye ludibene, lufuna umaleko olungileyo wesamente. Ngokufanayo, ukuze iiseli zethu zemisipha zihlale zomelele, iproteni ekhethekileyo ebizwa ngokuba yi-dystrophin , efana nesamente, ibalulekile.
I-Duchenne muscular dystrophy (DMD) yimeko yemfuza eyenzeka xa umzimba ungavelisi ngokwaneleyo iproteni ye-dystrophin, ungayivelisi ngokwaneleyo, okanye ungayivelisi ngokwaneleyo. Xa le 'glue' ilahlekile, udonga lwemisipha luba buthathaka, luqhekeke kwaye alunakulungiswa. Yiyo loo nto izihlunu ziba buthathaka ngokuhamba kwexesha.
Ukongeza kule ngxaki, abantwana abane-DMD banee-enzymes ezisebenzayo kakhulu ezibizwa ngokuba yi -histone deacetylases (ii-HDAC) . Oku kubangela ukudumba okungapheliyo kwimisipha. Oku kunciphisa ngakumbi ukulungiswa kwemisipha, kwaye imisipha ithathelwa indawo ngamafutha kunye nezicubu ezibomvu.
Ukuza kuthi ga ngoku, oogqirha bebesebenzisa ii-steroids, unyango lomzimba, kunye nezixhobo zokuncedisa ezifana nezitulo ezinamavili ukunyanga i-DMD. Kodwa i-Duvyzat liyeza lokuqala elingeyo-steroidal. Lisebenza ngokulawula i-enzyme ye-HDAC esebenza kakhulu. Oku kunciphisa ukudumba kwimisipha kwaye kuvumele ukuba iqhekeke. Oku kuthetha ukuba isantya apho izihlunu zibuthathaka khona siyancitshiswa.
Ndingayisebenzisa njani le yeza?
I-Duvyzat liyeza elenziwe ngolwelo olisela ngomlomo. Lifanele lithathwe kabini ngemini, kusasa nasebusuku, kunye nokutya .
- Kubaluleke kakhulu ukusela amayeza ngexesha elifanayo yonke imihla .
- Ngaphambi kokusebenzisa ibhotile yeyeza, kufuneka uyishukumise kakuhle ubuncinane imizuzwana engama-30 .
- Linganisa iyeza, usebenzisa isirinji ekhethekileyo eza nalo.
- Eyona nto ibalulekileyo: Musa ukuxuba eli yeza namanzi okanye naluphi na olunye ulwelo.
Ugqirha wakho angakunika eli yeza yedwa, okanye angakunika kunye nee-steroids. Kuya kugqitywa ngokuxhomekeke kwimeko yomntwana.
Ziye zafundwa njani iimpawu zale mithi?
Kwisifundo esikhulu sokuhlola ukusebenza kakuhle kunye nokhuseleko lwale chiza, abafana abane-DMD bahlulwe baba ngamaqela amabini.
1. Iqela lokuqala: Banikwa iyeza iDuvyzat.
2. Iqela lesi-2: Banikwa into efana neyeza, kodwa ingenaso isithako esisebenzayo kuyo. Kwizonyango, oku sikubiza ngokuba yi -'placebo' .
Oku kwenzelwa ukulinganisa isiphumo sokwenyani sesiyobisi, ukuba sahluke kangakanani na ekubeni silapho nje. Bonke abathathi-nxaxheba kolu phononongo babengamakhwenkwe. Ubudala babo obuqhelekileyo yayiyiminyaka eli-9 ubudala.
| Iikhrayitheriya eziphambili zokufaneleka ukubandakanywa kolu phando | |
|---|---|
| Uvavanyo | Imfuneko |
| Ukunyuka ngezitebhisi ezine | Umntwana unikwe ixesha lokunyuka amanyathelo amane ngokukhawuleza. Oku kufanele kuthathe ngaphantsi kwemizuzwana esi-8. |
| Ixesha lokuvuka | Ixesha elithathwayo ukuma emva kokulala ngaphandle koncedo liyalinganiswa. Oku kufanele kuthathe phakathi kwemizuzwana emi-3 neli-10. |
Emva kokunika olu nyango iiveki ezingama-72, kwalinganiswa utshintsho kwizakhono zabantwana. Kwasetyenziswa nezinye iimvavanyo ezininzi koku.
- Amanqaku oVavanyo lwe-Ambulatory Ambulatory (NSAA) eNorth Star: Indlela yokulinganisa amandla omntu one-DMD okwenza imisebenzi yemihla ngemihla.
- Uvavanyo lokuhamba ngeenyawo lwemizuzu emithandathu: Lubona ukuba ungahamba umgama ongakanani kwimizuzu emi-6.
- Uvavanyo lwe-MRI: Lulinganisa utshintsho kwiintsalela zamafutha kwimisipha yendawo yethanga.
Zithini iziphumo zolu phononongo?
Iziphumo ziyakhuthaza ngokwenene. I-DMD yimeko apho iimpawu ziba mandundu ngokuhamba kwexesha. Okucacileyo kolu phononongo kukuba izinga lokuwohloka kwabantwana abathathe iDuvyzat lalicotha kakhulu kunabantwana abangazange balithathe iyeza (i-placebo) .
Oku kuthetha ukuba nangona eli yeza lingenakunyanga ngokupheleleyo esi sifo, linokuthoba izinga lobuthathaka bemisipha kwaye lincede umntwana agcine amandla akhe okusebenza ixesha elide.
- Amandla kunye nokuhambahamba: Ixesha elathathwayo ukunyuka izinyuko ezine landa ngemizuzwana eli-1.25 kuphela emva kweeveki ezingama-72 kubantwana abathathe iDuvyzat. Kodwa kwathatha malunga nemizuzwana emi-3 ngaphezulu kubantwana abangazange bathathe iyeza. Oko kuthetha ukuba iDuvyzat yanciphisa ukwehla kwamandla abo okunyuka izinyuko malunga nama-40%.
- Amanqaku e-NSAA: Ekupheleni kophando, ukwehla kwamanqaku e-NSAA bekuncinci kakhulu kubantwana abathathe iDuvyzat kunabo bangazange bathathe iyeza. Oku kukwabonisa ukuba izinga lokuncipha kwamandla emisipha linciphile.
Ezi ziphumo zinokwahluka kumntwana wakho, ngoko ke kufuneka uxoxe ngeenzuzo kunye neengozi zale mithi nogqirha wakho ngaphambi kokuba wenze isigqibo.
Iziphumo ebezingalindelekanga kunye nendlela yokuzilawula?
Njengayo nayiphi na imithi, iDuvyzat inokuba nemiphumo emibi. Kubalulekile ukuqaphela oku.
| Imiphumela | Oko kufuneka ukwenze |
|---|---|
| Iziphumo ebezingalindelekanga eziqhelekileyo: - Urhudo - Isicaphucaphu/ukuhlanza - Isisu esibuhlungu - Ifiva | Ukuba ufumana naziphi na kwezi mpawu , xelela ugqirha wakho ngoko nangoko . Sela amanzi amaninzi kunye nolwelo. Ugqirha wakho unokucebisa amayeza okanye utshintsho kwindlela yokutya ukuba kuyimfuneko. |
| Iziphumo ebezingalindelekanga eziphawulekayo: - Ukwehla kweeplatelets zegazi (thrombocytopenia) - Amanqanaba aphezulu amafutha egazini (i-hypertriglyceridemia) | Ugqirha uhlala ekwenza uvavanyo lwegazi ukujonga ezi zinto. Ukuba ukrweleka lula, ukuba impumlo yakho iyopha, ukuba unengxaki yokuyeka ukopha,Xelela ugqirha ngoko nangoko. |
Ezi azizo zodwa iimpawu. Ukuba ufumana ezinye iimpawu ezingaqhelekanga, thetha nogqirha wakho ngazo.
Ngaba kukho iingxaki ngamanye amayeza?
Ewe, iDuvyzat inokusebenzisana namanye amayeza. Ngoko ke, kubalulekile ukuxelela ugqirha wakho ngawo onke amayeza asetyenziswa ngumntwana wakho, kuquka amayeza abhalwe ngugqirha, amayeza athengiswa ngaphandle kwemvume kagqirha (OTC), iivithamini, kunye neemveliso zemifuno.
Ngokukodwa, yazisa ugqirha wakho ukuba usebenzisa la mayeza alandelayo:
- Amanye amayeza okwehlisa i-cholesterol (umz. i-atorvastatin, i-simvastatin)
- Amayeza esifo seswekile afana ne-metformin
- Amayeza achaphazela isingqisho sentliziyo (umz. i-amiodarone)
- Amanye amayeza okubulala iintsholongwane (umz. azithromycin, ciprofloxacin)
- Amanye amayeza okugula ngengqondo
- Amanye amayeza okunyanga ii-aleji
Olu luhlu aluphelelanga, ngoko ke kungcono ukuxelela ugqirha wakho ngayo yonke into umntwana wakho ayithathayo.
Umyalezo Wokuya Ekhaya
- I-Duvyzat liyeza elitsha, elingeyo-steroidal elinciphisa izinga lobuthathaka bemisipha obubangelwa yi-Duchenne Muscular Dystrophy (DMD).
- Oku akuyi kunyanga ngokupheleleyo esi sifo, kodwa kuya kunceda kakhulu ukuphucula umgangatho wobomi bomntwana.
- Landela imiyalelo kagqirha wakho xa usebenzisa iyeza. Ukuba ufumana naziphi na iziphumo ebezingalindelekanga, yazisa ugqirha wakho ngoko nangoko.
- Ungalibali ukuxelela ugqirha ngazo zonke ezinye iziyobisi umntwana wakho azisebenzisayo.
- Awuwedwa kolu hambo. Ugqirha wakho, ingcali yakho yezonyango, kunye nosapho lwakho bonke balapha ukukunceda. Musa ukoyika.
💬 Comments (0)
Akukho zimvo zithunyelweyo okwangoku. Faka uluvo lwakho apha okokuqala.
Faka uluvo lwakho