Yintoni i-PPMS (i-Primary Progressive Multiple Sclerosis)? Masithethe ngayo ngokulula!

Usenokuba ukhe weva ngemeko ebizwa ngokuba yi- 'Multiple Sclerosis (MS)'. I-PPMS (i-Primary Progressive Multiple Sclerosis) luhlobo oluthile lwe-MS. Kwimeko enjalo, iimpawu zakho aziveli ngequbuliso, ziphele emva kweentsuku ezimbalwa, zize zibuye kwakhona. Endaweni yoko, iimpawu zakho kancinci kancinci, kancinci kancinci, kwaye ziyanda ngokuhamba kwexesha . Njengokunyuka izitebhisi, ezi mpawu ziya ziba mandundu kancinci. Ungakhathazeki, oku kunokuvakala kuyinkimbinkimbi kancinci. Masithethe ngayo yonke into ngokucacileyo nangokulula, kulungile?

Yintoni kanye kanye i-PPMS?

Ngamafutshane, i-'Multiple Sclerosis (MS)' yimeko apho inkqubo yethu yomzimba yokuzikhusela, inkqubo esikhusela kwizifo, ihlasela ngempazamo inkqubo yethu yemithambo-luvo ('inkqubo yemithambo-luvo ephakathi') - ingqondo kunye nomqolo (iintambo zemithambo-luvo ezingaphakathi komqolo). Oku konakalisa isigqubuthelo sokukhusela (i-myelin) esijikeleze imicu yemithambo-luvo.

Okwangoku, kukho iintlobo ezininzi eziphambili ze-MS.

• I-Relapsing-Remitting MS (RRMS): Uninzi lwabantu lunolu hlobo. Kolu hlobo, iimpawu ziya zisiba mbi ngequbuliso (sikubiza oku ngokuthi 'relapse'), emva koko emva kwexesha elithile, iimpawu ziyaphela ngokupheleleyo okanye ziphele ngokupheleleyo.
• I-Primary Progressive MS (PPMS): Kwi-PPMS, uhlobo esithetha ngalo namhlanje, kukho 'ukubuyela umva' okucacileyo okumbalwa njengakwi-RRMS. Endaweni yoko, iimpawu ziya zisiba mandundu kancinci kwasekuqaleni. Ngamanye amaxesha kunokubakho 'ukutshintshatshintsha' okuncinci, oko kuthetha ukuba iimpawu ziya zisiba mandundu ngakumbi nangakumbi. Kodwa ngokubanzi, imeko idla ngokuba mandundu kancinci kancinci.
• I-Secondary Progressive MS (SPMS): Abanye abantu abane-RRMS banokuba nesifo se-SPMS emva kweminyaka eliqela. Iimpawu zabo ziya zisiba mandundu kancinci kancinci kwaye ukuphinda babuyele esiqhelweni kuya kuncipha.

I-PPMS kunye ne-SPMS ngamanye amaxesha zibizwa ngokuba yi-'Progressive MS' kuba zombini zinesimo esiqhubekayo. Kwi-PPMS, kukho inqanaba elithile lokudumba kwinkqubo yemithambo-luvo, kwaye iiseli zemithambo-luvo zonakala kwaye kancinci kancinci zilahlekelwa ngumsebenzi wazo. Oku sikubiza ngokuba yi-'neurodegeneration'.

Ixhaphake kangakanani i-PPMS?

Kukho izigidi zabantu abane-MS kwihlabathi liphela. Kuqikelelwa ukuba kukho malunga nesigidi sabantu abane-MS eMelika kuphela. Malunga ne-10% yabo, okanye malunga nomntu omnye kwabalishumi, banolu hlobo lwe-MS olubizwa ngokuba yi-PPMS. Ngoko ke, i-PPMS ayixhaphakanga kangako kunezinye iintlobo ze-MS.

Zithini iimpawu ze-PPMS? Ziziva njani?

Uphawu oluphambili lwe-PPMS kukuba iimpawu ze-MS ziya zisiba mandundu kancinci kancinci.Ezi mpawu zinokwahluka kumntu nomntu. Kwakhona, indlela eziqala ngayo iimpawu kunye nesantya eziqhubeka ngaso ziyahluka kumntu nomntu.

Nazi ezinye zezona mpawu zixhaphakileyo:

• Ubunzima bokuhamba: Olu luphawu lokuqala oluchaphazela izigulane ezininzi ze-PPMS. Basenokuba nokuqina kwemilenze yabo, ubuthathaka, kunye nokulahlekelwa yibhalansi. Basenokuziva bediniwe ngokukhawuleza xa behamba.
• Ukurhawuzelela okanye ukuba ndindisholo kwiindawo ezahlukeneyo zomzimba: Oku kungenzeka ezandleni, ezinyaweni, ebusweni, okanye naphi na emzimbeni.
• Utshintsho lombono: Umbono ofiphele kwelinye iliso, ukubona kabini, okanye intlungu xa ushukumisa amehlo kusenokwenzeka. Nangona kunjalo, ezi ngxaki zokubona azixhaphakanga kwi-PPMS kunakwi-RRMS.
• Ukudinwa ngalo lonke ixesha (`ukudinwa`): Oku akukudinwa okuqhelekileyo. Usenokuziva ngathi awuphucuki nokuba uphumle kangakanani na. Oku kungaba ngumqobo omkhulu kwimisebenzi yakho yemihla ngemihla.
• Ubunzima bokuchama kunye nokukhupha indle: Oku kunokuquka umnqweno wokuchama ngequbuliso, ngequbuliso (`ungxamiseko`), ubunzima bokulawula ukuchama (`ukungakwazi ukuzibamba`), kunye nobunzima bokukhupha isinyi ngokupheleleyo. Ukuqhinwa nako kuqhelekile.
• Ukuvakalelwa ngathi kukho umntu obambe isifuba okanye isisu sakho ngokuqinileyo: Abanye abantu bakubiza oku ngokuthi 'yi-MS hug'.
• Imvakalelo yombane ohamba emqolo, ezingalweni, okanye emilenzeni xa intamo igobile phambili: Oku kubizwa ngokuba yi-'Lhermitte's sign'.
• Ukuqina kwemisipha (ukuqaqamba) okanye ubuthathaka: Oku kunokwenza kube nzima ukulawula nokushukumisa amalungu akho omzimba.
• Iingxaki zokuthetha: Usenokuvakalelwa kukuba amazwi akho ayavakala okanye isantya sakho sokuthetha siyatshintsha.
• Iingxaki zokuginya.
• Iingxaki zokucinga kunye nokukhumbula: Ukuziva ngathi ingqondo yakho inenkungu ('ingqondo enenkungu'), oko kuthetha ukuba kunzima ukukhumbula izinto, ukugxila, kunye nokwenza izigqibo.
• Iingxaki zengqondo: Uxinzelelo , ixhala , kunye nokucaphuka kunokwenzeka.

Into ebalulekileyo kukuba ezi mpawu zisenokungabonakali kangako ekuqaleni. Usenokucinga, “Owu, kukudinwa nje.” Kodwa ukuba ziya ziba nzima ngakumbi ngokuhamba kwexesha, kufuneka ukhathazeke.

Kutheni i-PPMS ikhula? Yintoni unobangela?

Izazinzulu azikayazi imbangela echanekileyo ye-MS (kuquka i-PPMS), kodwa kukho izinto ezininzi ekucingelwa ukuba zinegalelo kuyo:

1. Ukuthambekela kwiGenetic: Kucingelwa ukuba utshintsho oluthile kwi-genes zethu (i-DNA) lunokusenza sibe namathuba amaninzi okufumana iimeko zokuzikhusela komzimba ezifana ne-MS (isifo apho inkqubo yomzimba yokuzikhusela ihlasela umzimba). Nangona kunjalo, oku akuthethi ukuba ukuba une-MS, nabantwana bakho baya kuyifumana. Impembelelo ye-genes kwi-MS ayinkulu njengoko unokucinga. Ke ngoko, umngcipheko wokudlulisela abantwana kwesi sifo uphantsi kakhulu.

2. Izinto Ezichaphazela Indalo: Olunye uphando lubonisa ukuba izinto ezithile kwindawo esihlala kuyo zinokuba negalelo ekuphuhlisweni kwe-MS. Umzekelo:

• Usulelo lwentsholongwane : Ezinye izifo zentsholongwane, ezifana ne-Epstein- Barr Virus (EBV), nazo ziyaphandwa ukuze kufunyanwe unxibelelwano phakathi kwe-MS kunye neentlobo ezithile zosulelo.
• Ukunqongophala kweVithamin D : Kukwakho nenkolelo yokuba abantu abanamanqanaba aphantsi eVithamin D ngenxa yokukhanya kwelanga basengozini enkulu yokuhlaselwa yiMS.
• Ukutshaya: Abantu abatshayayo basengozini enkulu yokuba ne-MS kwaye banokufumana ukuqhubela phambili kwesi sifo ngokukhawuleza.

3. Umsebenzi wenkqubo yomzimba yokuzikhusela: Ngandlela thile, ezi zinto zemfuza kunye neemeko ezingqongileyo ziyadibana ukuze zenze into engalunganga kwinkqubo yomzimba yokuzikhusela. Yiyo loo nto iqala ukuhlasela inkqubo yethu yemithambo-luvo.

Ngamafutshane, i-PPMS ayisosifo esibangelwa sisizathu esinye. Sibangelwa kukudibana kwezinto ezininzi.

Ziziphi ezinye iingxaki ezinokubakho ngenxa ye-PPMS?

Njengoko iimpawu ze-PPMS ziqhubeka, ezinye iingxaki kunye neengxaki zinokuvela. Eminye imizekelo yile:

• Ukuqina kwemisipha (ukuqaqamba): Oku kunokukhokelela ekwandeni kwentlungu kunye nobunzima bokushukuma.
• Umngcipheko wokulahlekelwa ngokupheleleyo kombono (kunqabile).
• Ubunzima bokulawula isinyi buyanda: Oku kunokukhokelela kwiintsholongwane zomchamo rhoqo.
• Ukwanda kokungasebenzi kakuhle ngokwesondo.
• Ukuwohloka ngakumbi kwenkumbulo kunye nobuchule bokucinga.
• Iingxaki zempilo yengqondo: Iimeko ezinje ngokudakumba kunye nokuxhalaba zinokuba mandundu.
• Ukuwa rhoqo kunye nokwenzakala okubangelwa kukwaphuka kwamathambo.
• Izilonda zoxinzelelo ezibangelwa kukuchitha ixesha elininzi ebhedini.
• Umngcipheko wosulelo lwemiphunga: Ingakumbi xa isifo sinzima.

Ifunyaniswa njani i-PPMS? (Ukuxilongwa)

Akukho vavanyo lunye olunokuchonga i-PPMS ngokuqinisekileyo. Ugqirha wakho uya kuqwalasela iimpawu zakho, imbali yakho yezonyango, uvavanyo lomzimba, kunye nezinye iimvavanyo ezikhethekileyo, aze emva koko afikelele kwisigqibo sokuba "oku kusenokuba yi-PPMS."

Nazi ezinye zeemvavanyo eziqhele ukwenziwa koku:

1. I-MRI (Magnetic Resonance Imaging): Olu lolona vavanyo luphambili olusetyenziselwa ukufumanisa i-MS. Lunokukhangela umonakalo (izilonda) engqondweni nasemgogodleni obangelwa yi-MS. Kwi-PPMS, indlela ezi zilonda ezitshintsha ngayo ngokuhamba kwexesha ibalulekile.

2. Ukubhaqwa kweLumbar (ekwaziwa ngokuba yiSpinal Tap): Oku kuquka ukuthatha isampuli encinci yolwelo lwe-cerebrospinal (CSF) kumqolo wakho osezantsi. Olu lwelo luyahlolwa ukuze kubonwe ukuba kukho naluphi na utshintsho oluthile kwi-MS, njengeeproteni ezibizwa ngokuba zii-oligoclonal bands. Ezi azikho ngqo kwi-MS, kodwa zinokuba luphawu lokuvuvukala engqondweni okanye emgogodleni.

3. Uvavanyo lwegazi: Olu vavanyo lunceda ukuqinisekisa ukuba awunazo ezinye iimeko ezibangela iimpawu ezifana neze-MS.

4. Izifundo Ezinokwenzeka Ezivuselelweyo: Ezi zilinganisa isantya esihamba ngaso imiqondiso yombane kwinkqubo yemithambo-luvo. Xa imithambo-luvo yonakaliswe yi-MS, isantya esihamba ngaso le miqondiso sinokucothiswa.

5. I-Optical Coherence Tomography (OCT): Olu luvavanyo lwamehlo olungenabuhlungu olunokujonga umonakalo kwi-optic nerve kunye ne-retina ngasemva kweliso ngenxa ye-MS.

Ukuze kuchongwe i-PPMS, oogqirha bacinga ngokuba mandundu kancinci kancinci kweempawu kangangexesha elingangonyaka ubuncinane kunye nokuba khona kweempawu ezithile kwi-MRI scan .

I-PPMS idla ngokuvela xa ineminyaka emingaphi ubudala?

Uninzi lwabantu lufunyaniswa lune-PPMS xa lukwiminyaka yabo engama-40 okanye engama-50. Eli lixesha elingaphantsi kancinci kune-RRMS. Nangona kunjalo, linokwenzeka nakweyiphi na iminyaka, kubantu abancinci nabadala.

Ziziphi iindlela zonyango ze-PPMS?

Kukho iinjongo ezimbini eziphambili ekunyangeni i-PPMS:

1. IiNyango eziGuqula izifo (ii-DMT): Ezi zizama ukunciphisa isantya esiba sibi ngaso isifo.

2. Ulawulo lweempawu: Oku kunceda ukunciphisa ukungonwabi kwakho nokuphucula umgangatho wobomi bakho.

Iindlela Zonyango Eziguqula Izifo (ii-DMT)

Kukho iintlobo ezahlukeneyo ze-DMTs ezikhoyo kwi-RRMS, kodwa zimbalwa kakhulu ii-DMTs ezivunyiweyo kwi-PPMS.

• I-Ocrelizumab (i-Ocrevus®):Le yeyona DMT iphambili evunyiweyo ngoku kwi-PPMS. Liyeza elinikwa ngemithambo yegazi. Uphando lubonise ukuba eli yeza linokunceda ngandlela ithile ukulawula ukonakala kweempawu kwizigulana ze-PPMS.

Oogqirha bakholelwa ukuba i-PPMS ayinakuchaphazeleka kakhulu kukudumba kwenkqubo yomzimba yokuzikhusela kune-RRMS, yiyo loo nto ii-DMT ezijolise kuyo zingasebenzi kakuhle. Nangona kunjalo, kukho uphando oluninzi oluqhubekayo malunga ne-MS, ngoko ke kusenokubakho unyango oluninzi lwe-PPMS kwixesha elizayo.

Ukulawula iimpawu

Le yinxalenye ebaluleke kakhulu yokulawula i-PPMS. Olu nyango lumiselwa ziimpawu zakho ezithile.

• Unyango Lomzimba: Oku kunokuba luncedo kakhulu kwizinto ezinje ngobunzima bokuhamba, ukuqina kwemisipha, kunye nobuthathaka. Ukuzilolonga kunye nokuzolula kunokunceda ukuphucula amandla, ukulinganisela kunye nokuhambahamba.
• Unyango Lomsebenzi: Luzisa iindlela nezixhobo zokunceda abantu benze imisebenzi yemihla ngemihla (umz., ukunxiba, ukutya, ukubhala) ngokuzimela.
• Iyeza:
• Amayeza okuqinisa izihlunu (ukuqaqamba kwemisipha).
• Amayeza okudinwa.
• Amayeza eengxaki zesinyi.
• Amayeza entlungu.
• Amayeza okudakumba okanye ukuxhalaba.
• Unyango lokuthetha: Ukuba unengxaki yokuthetha okanye yokuginya.
• Izinto Zokunceda Ekuhambeni: Usenokufuna izinto ezifana nomsimelelo, isixhobo sokuhamba, okanye isitulo esinamavili.

Ugqirha wakho uza kukuchazela ngemiphumo emibi enokubakho yalo naliphi na iyeza okanye unyango ngaphambi kokuba uluqalise, ngoko ungoyiki ukubuza nayiphi na imibuzo onayo.

Ngaba ikho indlela yokuthintela i-PPMS?

Ngelishwa, akukho ndlela yokuthintela i-MS (kuquka i-PPMS) kuba isizathu esichanekileyo asikaziwa.

Nangona kunjalo, ukuba une-MS, kukho izinto onokuzenza ukunciphisa inani le-flare-ups (`ukubuyela umva` – nangona oku kunqabile kwi-PPMS) kunye nokulawula izinga apho isifo siba mandundu khona:

• Ukuthatha unyango olumiselweyo (ingakumbi ii-DMTs) kanye njengoko ugqirha emyalele.
• Ukulandela indlela yokuphila esempilweni (ukutya kakuhle, ukulala kakuhle, ukuzilolonga).
• Ziphephe ngokupheleleyo ukutshaya.
• Ukuzama ukunciphisa uxinzelelo kangangoko kunokwenzeka.

Luhlobo luni lwamava umntu one-PPMS ajongene nawo?

I-PPMS sisifo esinganyangekiyo esinokuba nefuthe elikhulu kubomi bakho bemihla ngemihla. Njengoko iimpawu zisiba mandundu, kunokufuneka wenze utshintsho oluthile kwindlela ophila ngayo ukuze uzikhusele kwaye uphephe iingozi.

Khawucinge nje, ukuba unengxaki yokuhamba wedwa, kuya kufuneka uthethe nogqirha wakho ngesixhobo sokuhamba esifana nesitulo esinamavili. Izinto ezinje zinokuba nzima ukuzamkela ekuqaleni. Kodwa,Ezi zixhobo ziya kukunceda usebenze kancinci ngokuzimela kwaye ugcine ubomi bakho busebenza.

Ngaphandle kwemiphumo yomzimba ye-PPMS, ukuhlala nesi sifo esinganyangekiyo kunokuba nefuthe elikhulu kwimpilo yakho yengqondo. Kuqhelekile ukuba neemvakalelo zosizi, umsindo, ukuphelelwa lithemba kunye nokuba wedwa. Abanye abantu bafumana isiqabu esikhulu xa bethetha nogqirha wezempilo yengqondo , njengomcebisi okanye ugqirha wengqondo. Ngoko ke, ukuba uziva unesidingo, ungathandabuzi ukucela uncedo.

Khumbula, akukho nyango lwe-PPMS okwangoku. Nangona kunjalo, uphando luyaqhubeka ukuze kufundwe ngakumbi ngayo kwaye kufumaneke unyango olutsha olunokukuzisela isiqabu. Ngoko ke musa ukuphelelwa lithemba.

Iimpawu zePPMS ziba mandundu ngokukhawuleza kangakanani?

Lo ngumbuzo abantu abaninzi abawubuzayo. Nangona kunjalo, wonke umntu one-PPMS uhlangabezana nawo ngendlela eyahlukileyo. Kwabanye abantu, iimpawu zinokuba mandundu kancinci, ngokuhamba kweminyaka. Kwabanye, iimpawu zinokuba mandundu ngokukhawuleza.

Kunzima ukuqikelela oku ngokuchanekileyo. Ukuba ubona naluphi na utshintsho olucacileyo kwiimpawu zakho, okanye ukuba ziya zisiba mandundu ngokukhawuleza, qiniseka ukuba uthetha nogqirha wakho ngayo loo nto ngoko nangoko.

Ingakanani iminyaka yobomi bomntu one-PPMS?

Oku kuyinto abantu abaninzi abayoyikayo. Nangona kunjalo, i-PPMS ayichaphazeli ngqo ubomi bakho. Oko kukuthi, ukuba ne-PPMS akuthethi ukuba ixesha lobomi bomntu lifutshane kunelabanye abantu.

Nangona kunjalo, iingxaki ezinkulu zesifo (umz., usulelo olunzima, iingxaki ezibangelwa kukuphumla ebhedini ixesha elide) zinokuba nefuthe elisongela ubomi ukuba azilawulwa kakuhle. Ke ngoko, kubaluleke kakhulu ukulandela iingcebiso zonyango kunye nokunyamekela impilo yakho.

Ndifanele ndimbone nini ugqirha?

Ukuba une-PPMS, kubalulekile ukuba uhlolwe rhoqo ngugqirha. Ukongeza, bonana nogqirha ukuba:

• Ukuba iimpawu zakho ze-PPMS ziya zisiba mandundu kwaye zichaphazela ubomi bakho bemihla ngemihla.
• Ukuba kutsha, kuvela iingxaki ezinzima ezifana nokukhubazeka komzimba.
• Ukuba unentlungu engapheliyo okanye ukungakhululeki kwamalungu akho, okanye ukuba iyanda.
• Ngenxa yokuba i-PPMS inokuchaphazela ibhalansi yakho kunye nokulungelelaniswa komzimba, ukuba uyawa uze uzenzakalise, bona ugqirha ngoko nangoko okanye utsalele umnxeba iinkonzo zongxamiseko.
• Ukuba iyeza olisebenzisayo libangela iziphumo ebezingalindelekanga .
• Ukuba uziva ugula ngengqondo (njengokudakumba, ixhala).

Ndingayibuza yiphi imibuzo ugqirha?

Xa usiya kugqirha, kungcono ukubhala phantsi imibuzo onayo. Nazi ezinye zemizekelo:

• Ngaba ndine-PPMS, okanye olunye uhlobo lwe-MS? Ndingaqiniseka njani?
• Ndingazilawula njani iimpawu zam? Zeziphi izinto ezithile endinokuzenza?
• Ungandicebisa unyango lomzimba okanye unyango lomsebenzi? Ndingazifumana phi ezo nkonzo?
• Ngawaphi amayeza ondicebisa wona? Zithini iziphumo zawo ezingalindelekanga? Ndingawathatha ixesha elingakanani?
• Ngaba kuya kufuneka ndisebenzise isitulo esinamavili okanye esinye isixhobo sokuhamba? Ukuba kunjalo, ixesha elingakanani?
• Ngaba kufuneka nditshintshe indlela enditya ngayo?
• Ndingenza ntoni ukuze ndinyamekele impilo yam yengqondo?

Umyalezo Wokugqibela Wokuya Ekhaya

I-PPMS, njengezinye iintlobo ze-Multiple Sclerosis, sisifo esinokuba nefuthe elikhulu ebomini bakho. Yiyo loo nto. Kodwa ungakhathazeki, awuwedwa.

Khumbula, kukho iindlela zonyango ezinokukunceda unciphise ukuqhubela phambili kweempawu zakho kwaye uphucule umgangatho wobomi bakho.

Ekuqaleni, usenokungaziboni iimpawu ezininzi, kodwa ekuhambeni kwexesha, zinokunyuka. Kusenokufuneka usebenzise izixhobo ezifana nesitulo esinamavili ukukunceda uhambe wedwa. Asikokuphela kwehlabathi. Ugqirha wakho, ingcali yezonyango, kunye nabanye ababoneleli ngeenkonzo zempilo banokukunceda endleleni. Banokukunceda ulawule iimpawu zakho kwaye bakukhokele ukuba uphile ubomi obusempilweni nobusebenzayo kangangoko kunokwenzeka.

Ngoko ke, hlala unethemba. Fumana ulwazi. Buza imibuzo. Fumana uncedo olufunayo. Thetha nosapho lwakho kunye nabahlobo ngale nto. Inkxaso yabo iya kuba namandla amakhulu kuwe.