Yintoni eNtsha ngonyango lwe-PPMS? Isikhokelo seZibonelelo
Umxholo
- Uphando lweziyobisi kwi-NINDS
- Amachiza onyango
- Ukulungiswa kweGene
- Iingcebiso malunga nokubuyiselwa kwisimo sangaphambili
- Unyango lomzimba kunye nophando kwimithambo
- Izinto ezintsha kunyango lwasemsebenzini
- Uvavanyo lwezonyango lwe-PPMS
- Ixesha elizayo lonyango lwe-PPMS
Izinto ezintsha kwi-Multiple Sclerosis Treatment
I-primary progressive multiple sclerosis (i-PPMS) ayinayo unyango, kodwa kukho iindlela ezininzi zokulawula imeko. Unyango lujolise ekunciphiseni iimpawu ngelixa kunciphisa ukubakho kokukhubazeka okusisigxina.
Ugqirha wakho kufuneka abe ngumthombo wakho wokuqala wokunyanga i-PPMS. Banokukunika iingcebiso kulawulo njengoko bejonga ukuqhubela phambili kwesi sifo.
Nangona kunjalo, usenokuba nomdla ekuhloleni izixhobo ezongezelelweyo zonyango lwe-PPMS. Funda malunga namathuba apha.
Uphando lweziyobisi kwi-NINDS
I-National Institute of Neurological Disorders and Stroke (NINDS) iqhuba uphando oluqhubekayo kuzo zonke iintlobo ze-multiple sclerosis (MS).
I-NINDS lisebe lamaZiko ezeMpilo kaZwelonke (NIH), kwaye ixhaswa yinkxaso mali karhulumente. I-NINDS ngoku iphanda iziyobisi ezinokuthi ziguqule i-myelin kunye nemfuza enokuthintela ukuqala kwe-PPMS.
Amachiza onyango
Ngo-2017, i-ocrelizumab (i-Ocrevus) yamkelwa yi-Food and Drug Administration (i-FDA) kunyango lwe-PPMS kunye nokubuyela kwakhona kwi-MS (RRMS). Eli chiza linokufakwa inaliti lelokuqala nelokuphela kwePMMS kwintengiso.
Ngokwe-NINDS, amanye amachiza kuphuhliso nawo abonisa isithembiso. La machiza onyango aya kusebenza ngokunqanda iiseli ze-myelin ekubeni zitshise zize ziguquke zibe zizilonda. Banokukhusela iiseli ze-myelin okanye bancede ukuzilungisa emva kohlaselo lokudumba.
I-drug cladribine yomlomo (Mavenclad) ngomnye wemizekelo enjalo.
Amanye amachiza aphandwayo anokukhuthaza ukukhula kwe-oligodendrocyte. Ii-Oligodendrocyte ziiseli ezithile zobuchopho ezinokunceda ekwenziweni kweeseli ezintsha ze-myelin.
Ukulungiswa kweGene
Isizathu esichanekileyo sePPMS- kunye neMS ngokubanzi-asaziwa. Icandelo lemfuza licingelwa ukuba linegalelo kuphuhliso lwezifo. Abaphandi bayaqhubeka nokufunda ngendima yemfuza kwi-PPMS.
I-NINDS ibhekisa kwimfuza enokuthi inyuse umngcipheko we-MS "njengofuzo olunokubakho." Umbutho ujonge kwiziyobisi ezinokuthi ziguqule ezi ntlobo zemfuza ngaphambi kokuba i-MS ikhule.
Iingcebiso malunga nokubuyiselwa kwisimo sangaphambili
I-National Multiple Sclerosis Society yenye yentlangano ebonelela ngohlaziyo kunyango kunyango.
Ngokungafaniyo ne-NINDS, uMbutho ngumbutho ongenzi nzuzo. Umsebenzi wabo kukusasaza ulwazi malunga ne-MS ngelixa bekonyusa imali yokuxhasa uphando kwezonyango.
Njengenxalenye yomsebenzi wayo wokuxhasa ukuthethelelwa kwesigulana, uMbutho uhlala uvuselela izibonelelo kwiwebhusayithi yayo. Ngenxa yokuba ukhetho lweziyobisi lilinganiselwe, unokufumana izixhobo zoluntu ekuvuseleleni ziluncedo. Nantsi inkcazo:
- ulungiso lwenyama
- unyango lomsebenzi
- ukuvuselelwa kwengqondo
- Unyango lomsebenzi wobugcisa (wemisebenzi)
- ulwimi lwezifo
Unyango lomzimba kunye nomsebenzi zezona ndlela zixhaphakileyo zokubuyisela kwimeko yesiqhelo kwi-PPMS. Ezi zilandelayo zezinye zezinto ezintsha ezikhoyo ezibandakanya ezi ndlela zonyango.
Unyango lomzimba kunye nophando kwimithambo
Unyango lomzimba (PT) lisetyenziswa njengendlela yokubuyisela kwimeko yesiqhelo kwi-PPMS. Iinjongo ze-PT ziyahluka ngokuxhomekeka kubukhali beempawu zakho. Isetyenziswa ikakhulu:
- ukunceda abantu abane-PPMS ukwenza imisebenzi yemihla ngemihla
- khuthaza inkululeko
- phucula ukhuseleko - umzekelo, ukufundisa iindlela zokulinganisa ezinokunciphisa umngcipheko wokuwa
- ukunciphisa amathuba okukhubazeka
- Nika inkxaso ngokweemvakalelo
- Misela imfuno yezixhobo ezincedisayo ekhaya
- phucula umgangatho wobomi ngokubanzi
Ugqirha wakho uya kuncoma unyango lomzimba kungekudala emva kokuxilongwa kokuqala. Ukuziqhelanisa nolukhetho kunyango kubalulekile - musa ukulinda de iimpawu zakho ziqhubeke.
Ukuzilolonga yinxalenye ebalulekileyo ye-PT. Inceda ukuphucula ukuhamba kwakho, amandla, kunye noluhlu lwentshukumo ukuze ugcine ukuzimela.
Abaphandi bayaqhubeka nokujonga izibonelelo zokuzivocavoca nge-aerobic kuzo zonke iintlobo ze-MS. Ngokwe-National Multiple Sclerosis Society, ukuzilolonga akuzange kucetyiswe ngokubanzi kude kube phakathi kwiminyaka yoo-1990. Ngeli xesha ke ithiyori yokuba umthambo wawungalunganga kwi-MS ekugqibeleni yagqitywa.
Unyango lwakho lomzimba lunokucebisa ngemithambo ye-aerobic onokuyenza-ngokukhuselekileyo- phakathi kokuqeshwa ukuphucula iimpawu zakho kunye nokwakha amandla akho.
Izinto ezintsha kunyango lwasemsebenzini
Unyango emsebenzini luya ngokuya lubonwa njengempahla kunyango lwe-PPMS. Inokuba luncedo ekuzinyamekeleni nasemsebenzini, kwaye inokunceda:
- izinto zokuzonwabisa
- ulonwabo
- ukuhlalisana
- ngokuzithandela
- ulawulo lwasekhaya
I-OT ihlala ithathwa njengefana ne-PT. Nangona ezi zonyango zincedisana, nganye yazo inoxanduva kwimicimbi eyahlukeneyo yonyango lwe-PPMS.
I-PT inokuxhasa amandla akho kunye nokuhamba, kwaye i-OT inokukunceda kwimisebenzi echaphazela ukuzimela kwakho, njengokuhlamba nokunxiba ngokwakho. Kuyacetyiswa ukuba abantu abane-PPMS bafune zombini uvavanyo lwe-PT kunye ne-OT kunye nonyango olulandelayo.
Uvavanyo lwezonyango lwe-PPMS
Unokufunda malunga nonyango lwangoku kunye nolusakhulayo lwe-PPMS kwi-ClinicalTrials.gov. Eli lelinye isebe le-NIH. Umsebenzi wabo kukubonelela "ngeziko ledatha kwizifundo zasekliniki zabucala nezixhaswa ngurhulumente eziqhutywa kwihlabathi liphela."
Ngena "PPMS" kwindawo ethi "Imeko okanye isifo". Uya kufumana izifundo ezininzi ezisebenzayo kunye nezigqityiweyo ezibandakanya amayeza kunye nezinye izinto ezinokuchaphazela isifo.
Ukongeza, unokucinga ngokuthatha inxaxheba kuvavanyo lweklinikhi ngokwakho. Oku kukuzinikela okukhulu. Ukuqinisekisa ukhuseleko lwakho, kuya kufuneka uxoxe ngezilingo zonyango kunye nogqirha wakho kuqala.
Ixesha elizayo lonyango lwe-PPMS
Akukho lunyango lwe-PPMS, kwaye ukhetho lweziyobisi lukhawulelwe. Uphando lusenziwa ukukhangela iziyobisi ngaphandle kwe-ocrelizumab ezinokunceda ukulawula iimpawu eziqhubela phambili.
Ukongeza kokungena kugqirha wakho rhoqo, sebenzisa ezi zixhobo ukugcina unolwazi malunga nohlaziyo lwamva nje ngaphakathi kuphando lwe-PPMS. Mninzi umsebenzi owenziwayo ukuqonda ngcono iPPMS kunye nokunyanga abantu ngokufanelekileyo.