Kuyini i-PPMS (i-Primary Progressive Multiple Sclerosis)? Ake sixoxe ngakho kalula!

Kungenzeka ukuthi uke wezwa ngesimo esibizwa ngokuthi ' i-Multiple Sclerosis (MS)'. I-PPMS (i-Primary Progressive Multiple Sclerosis) uhlobo oluthile lwe-MS. Kulesi simo, izimpawu zakho aziveli ngokuzumayo, ziphele ngemva kwezinsuku ezimbalwa, bese zibuya ngokuphindaphindiwe. Esikhundleni salokho, izimpawu zakho kancane kancane, kancane kancane, futhi kancane kancane zanda ngokuhamba kwesikhathi . Njengokukhwela izitebhisi, lezi zimpawu ziya ziba zimbi kancane kancane. Ungakhathazeki, lokhu kungase kuzwakale kuyinkimbinkimbi kancane. Ake sixoxe ngakho konke ngokucacile nangokulula, kulungile?

Iyini ngempela i-PPMS?

Kalula nje, i-'Multiple Sclerosis (MS)' yisimo lapho isimiso sethu somzimba sokuzivikela, uhlelo olusivikela ezifweni, sihlasela ngephutha isimiso sethu sezinzwa esiyinhloko ('isimiso sezinzwa esiyinhloko') - ubuchopho kanye nomgogodla (izintambo zezinzwa ezingaphakathi komgogodla). Lokhu kulimaza isembozo sokuvikela (i-myelin) esizungeze imicu yezinzwa.

Manje, kunezinhlobo eziningana eziyinhloko ze-MS.

• I-MS Ebuyela Emuva (RRMS): Iningi labantu linalolu hlobo. Kulolu hlobo, izimpawu ziya ziba zimbi ngokuzumayo (sikubiza ngokuthi 'ukubuyela emuva'), bese kuthi ngemva kwesikhashana, izimpawu ziphele ngokuphelele noma ziphele ngokuphelele.
• I-Primary Progressive MS (PPMS): Ku-PPMS, uhlobo esikhuluma ngalo namuhla, kuncane 'ukubuyela emuva' okucacile njengaku-RRMS. Esikhundleni salokho, izimpawu ziya ziba zimbi kancane kancane kusukela ekuqaleni. Ngezinye izikhathi kungase kube 'nokushintshashintsha' okuncane, okusho ukuthi izimpawu ziya ziba zimbi kakhulu. Kodwa jikelele, isimo sivame ukuba sibi kancane kancane.
• I-Secondary Progressive MS (SPMS): Abanye abantu abane-RRMS bangathuthukisa lesi sifo sibe yi-SPMS ngemva kweminyaka eminingana. Izimpawu zabo zibe zimbi kancane kancane futhi ukubuyela emuva kuya ngokuya kuncipha.

I-PPMS kanye ne-SPMS ngezinye izikhathi zibizwa ngokuthi 'i-Progressive MS' ngoba zombili zinohlobo oluqhubekayo. Ku-PPMS, kunezinga elithile lokuvuvukala ohlelweni lwezinzwa, futhi amangqamuzana ezinzwa ayalimala futhi kancane kancane alahlekelwa umsebenzi wawo. Yilokhu esikubiza ngokuthi 'ukwanda kwe-neurodegeneration'.

Ivame kangakanani i-PPMS?

Kunezigidi zabantu abane-MS emhlabeni jikelele. Kulinganiselwa ukuthi kunabantu abangaba yisigidi abane-MS e-United States kuphela. Cishe u-10% wabo, noma cishe umuntu oyedwa kwabayishumi, unalolu hlobo lwe-MS olubizwa ngokuthi i-PPMS. Ngakho-ke, i-PPMS ayivamile kangako kunezinye izinhlobo ze-MS.

Ziyini izimpawu ze-PPMS? Zizizwa kanjani?

Isici esiyinhloko se-PPMS ukuthi izimpawu ze-MS ziya ngokuya ziba zimbi kakhulu.Lezi zimpawu zingahluka kumuntu nomuntu. Futhi, indlela izimpawu eziqala ngayo kanye nesivinini ezithuthuka ngaso kuyahlukahluka kumuntu nomuntu.

Nazi ezinye zezimpawu ezivame kakhulu:

• Ubunzima bokuhamba: Lolu uphawu lokuqala oluthinta iziguli eziningi ze-PPMS. Bangase babe nokuqina kwemilenze yabo, ubuthakathaka, kanye nokulahlekelwa ibhalansi. Bangase futhi bazizwe bekhathele ngokushesha lapho behamba.
• Ukuqaqamba noma ukuba ndikindiki ezingxenyeni ezahlukene zomzimba: Lokhu kungenzeka ezandleni, ezinyaweni, ebusweni, noma kwenye indawo emzimbeni.
• Ukushintsha kokubona: Ukubona okufiphele esweni elilodwa, ukubona okubili, noma ubuhlungu lapho uhambisa amehlo kungase kwenzeke. Kodwa-ke, lezi zinkinga zokubona azivamile kakhulu ku-PPMS kunaku-RRMS.
• Ukuzizwa ukhathele ngaso sonke isikhathi (`ukukhathala`): Lokhu akusikho ukukhathala okuvamile. Ungase uzizwe sengathi awululami kungakhathaliseki ukuthi uthola ukuphumula okungakanani. Lokhu kungaba yisithiyo esikhulu emisebenzini yakho yansuku zonke.
• Ubunzima bokuchama kanye nokukhipha indle: Lokhu kungafaka phakathi isifiso sokuchama esiphuthumayo, esiphuthumayo (`ukuphuthuma`), ubunzima bokulawula ukuchama (`ukungazithibi`), kanye nobunzima bokukhipha konke esinyini . Ukuqunjelwa nakho kuvamile.
• Ukuzizwa sengathi othile ubambe isifuba sakho noma indawo yesisu sakho ngokuqinile: Abanye abantu bakubiza nangokuthi 'ukugona kwe-MS'.
• Umuzwa wokushaqeka kukagesi okwehla emhlane, ezingalweni, noma emilenzeni lapho intamo igobile phambili: Lokhu kubizwa ngokuthi 'uphawu lukaLhermitte'.
• Ukuqina kwemisipha (ukuqaqamba) noma ubuthakathaka: Lokhu kungenza kube nzima ukulawula nokunyakaza izitho zakho zomzimba.
• Izinkinga zokukhuluma: Ungase uzizwe sengathi amazwi akho ayabhidliza noma inkulumo yakho ishintsha ijubane.
• Izinkinga zokugwinya.
• Izinkinga zokucabanga nenkumbulo: Ukuzizwa sengathi ubuchopho bakho bunenkungu ('inkungu yobuchopho'), okusho ukuthi kunzima ukukhumbula izinto, ukugxila, nokwenza izinqumo.
• Izinkinga zengqondo: Ukucindezeleka , ukukhathazeka , kanye nokucasuka kungase kwenzeke.

Into ebalulekile ukuthi lezi zimpawu zingase zingabi sobala ekuqaleni. Ungase ucabange, “O, ukukhathala nje.” Kodwa uma ziba zimbi kancane kancane ngokuhamba kwesikhathi, kufanele ukhathazeke.

Kungani i-PPMS ikhula? Iyini imbangela?

Ososayensi abakayazi imbangela eqondile ye-MS (kufaka phakathi i-PPMS), kodwa kunezici eziningana okucatshangwa ukuthi zinegalelo kuyo:

1. Ukuthambekela Kwezakhi Zofuzo: Kucatshangwa ukuthi izinguquko ezithile kuzakhi zethu zofuzo (i-DNA) zingasenza sibe namathuba amaningi okuthuthukisa izimo zokuzivikela komzimba njenge-MS (isifo lapho amasosha omzimba ehlasela khona umzimba). Kodwa-ke, lokhu akusho ukuthi uma une-MS, nezingane zakho nazo zizoyithuthukisa. Ithonya lezakhi zofuzo ku-MS alilikhulu njengoba ungase ucabange. Ngakho-ke, ingozi yokudlulisela lesi sifo ezinganeni iphansi kakhulu.

2. Izici Zemvelo: Ucwaningo oluthile lusikisela ukuthi izinto ezithile endaweni esihlala kuyo zingase zibe negalelo ekuthuthukisweni kwe-MS. Isibonelo:

• Ukutheleleka ngegciwane : Ezinye izifo ezibangelwa amagciwane, njenge-Epstein- Barr Virus (EBV), nazo ziyaphenywa ukuze kutholakale ukuxhumana phakathi kwe-MS nezinhlobo ezithile zokutheleleka.
• Ukuntuleka kwe-Vitamin D : Kukhona futhi inkolelo yokuthi abantu abanamazinga aphansi e-vitamin D ngenxa yokukhanya kwelanga basengozini enkulu yokuthola i-MS.
• Ukubhema: Abantu ababhemayo basengozini enkulu yokuthola i-MS futhi bangase babhekane nokuqhubeka kwesifo ngokushesha.

3. Ukusebenza kwesimiso somzimba sokuzivikela: Ngandlela-thile, lezi zici zofuzo kanye nezemvelo ziyahlangana zidale okuthile okungahambi kahle ohlelweni lokuzivikela komzimba. Yingakho luqala ukuhlasela uhlelo lwethu lwezinzwa.

Kalula nje, i-PPMS ayisona isifo esibangelwa imbangela eyodwa. Ibangelwa yinhlanganisela yezici eziningi.

Yiziphi ezinye izinkinga ezingase zivele ngenxa ye-PPMS?

Njengoba izimpawu ze-PPMS ziqhubeka, kungase kuvele ezinye izinkinga nezinkinga. Ezinye izibonelo yilezi:

• Ukuqina kwemisipha (ukuqaqamba): Lokhu kungaholela ekwandeni kobuhlungu kanye nobunzima bokunyakaza.
• Ingozi yokulahlekelwa umbono ngokuphelele (okungavamile).
• Ubunzima bokulawula isinyi obuya buba bubi: Lokhu kungaholela ekuthelelekeni njalo komgudu womchamo.
• Ukwanda kokungasebenzi kahle kocansi.
• Ukwehla okuqhubekayo kwenkumbulo kanye nekhono lokucabanga.
• Izinkinga zempilo yengqondo: Izimo ezifana nokucindezeleka nokukhathazeka zingase zibe zimbi kakhulu.
• Ukuwa njalo kanye nokulimala okubangelwa yilokhu njengokuphuka kwamathambo.
• Izilonda zokucindezeleka ezibangelwa ukuchitha isikhathi esiningi embhedeni.
• Ingozi yokutheleleka kokuphefumula: Ikakhulukazi uma lesi sifo sibi kakhulu.

I-PPMS ihlolwa kanjani? (Ukuxilongwa)

Akukho ukuhlolwa okukodwa okungahlonza i-PPMS ngokuphelele. Udokotela wakho uzocabangela izimpawu zakho, umlando wakho wezokwelapha, ukuhlolwa ngokomzimba, kanye nezinye izivivinyo ezimbalwa ezikhethekile, bese efika esiphethweni sokuthi "lokhu kungaba yi-PPMS."

Nazi ezinye zezivivinyo ezivame ukwenziwa kulokhu:

1. I-MRI (I-Magnetic Resonance Imaging): Lolu yisivivinyo esiyinhloko esisetshenziselwa ukuxilonga i-MS. Lungabheka umonakalo (izilonda) ebuchosheni nasemgogodleni obangelwa yi-MS. Ku-PPMS, iphethini yalezi zilonda nokuthi zishintsha kanjani ngokuhamba kwesikhathi kubalulekile.

2. Ukubhoboza I-Lumbar (okwaziwa nangokuthi i-Spinal Tap): Lokhu kuhilela ukuthatha isampula encane ye-cerebrospinal fluid (CSF) emhlane wakho ongezansi. Lolu ketshezi luyahlolwa ukuze kubonakale ukuthi kukhona yini izinguquko ezithile kwi-MS, njengeprotheni ebizwa ngokuthi ama-oligoclonal bands. Lokhu akuzona eziqondile kwi-MS, kodwa kungaba uphawu lokuvuvukala ebuchosheni noma emgogodleni.

3. Ukuhlolwa kwegazi: Lokhu kusiza ukuqinisekisa ukuthi awunazo ezinye izimo ezibangela izimpawu ezifana ne-MS.

4. Izifundo Ezingase Zivele: Lezi zilinganisa isivinini lapho izimpawu zikagesi zihamba khona ohlelweni lwezinzwa. Lapho imizwa yonakaliswa yi-MS, isivinini lapho lezi zimpawu zihamba khona singancishiswa.

5. I-Optical Coherence Tomography (OCT): Lokhu ukuskena kwamehlo okungenabuhlungu okungahlola umonakalo emsipheni we-optic kanye ne-retina ngemuva kweso ngenxa ye-MS.

Ukuze kutholakale i-PPMS, odokotela bacabangela ukuwohloka kancane kancane kwezimpawu esikhathini esingaphansi konyaka kanye nokuba khona kwezici ezithile ku-MRI scan .

I-PPMS ivame ukwenzeka nini eminyakeni emingaki?

Iningi labantu litholakala line-PPMS lapho liseminyakeni yabo yo-40 noma yo-50. Lokhu kungokwesikhathi esingeside kakhulu kune-RRMS. Kodwa-ke, kungenzeka kunoma yimuphi ubudala, kokubili kubantu abasebasha nabadala.

Yiziphi izindlela zokwelapha i-PPMS?

Kunemigomo emibili eyinhloko ekwelapheni i-PPMS:

1. Izindlela Zokwelapha Eziguqula Izifo (DMTs): Lezi zizama ukunciphisa izinga lesi sifo esiba sibi ngalo.

2. Ukuphathwa Kwezimpawu: Lokhu kusiza ukunciphisa ukungakhululeki kwakho nokuthuthukisa ikhwalithi yokuphila kwakho.

Izindlela Zokwelapha Eziguqula Izifo (DMTs)

Kunezinhlobo eziningana zama-DMT atholakalayo kuma-RRMS, kodwa kunenani elilinganiselwe lama-DMT avunyelwe i-PPMS.

• I-Ocrelizumab (Ocrevus®):Lona yi-DMT eyinhloko evunyelwe njengamanje i-PPMS. Ungumuthi onikezwa ngemithambo yegazi. Ucwaningo lukhombisile ukuthi lo muthi ungasiza ngezinga elithile ukulawula ukwanda kwezimpawu ezigulini ze-PPMS.

Odokotela bakholelwa ukuthi i-PPMS cishe ayinawo amathuba amaningi okuthintwa ukuvuvukala kwesistimu yomzimba kune-RRMS, yingakho ama-DMT aqondisa lokhu engasebenzi kahle. Kodwa-ke, kunocwaningo oluningi oluqhubekayo mayelana ne-MS, ngakho-ke kungase kube nokwelashwa okwengeziwe kwe-PPMS esikhathini esizayo.

Ukulawula izimpawu

Lena yingxenye ebaluleke kakhulu yokuphatha i-PPMS. Lokhu kwelashwa kunqunywa yizimpawu zakho ezithile.

• Ukwelashwa Komzimba: Lokhu kungaba usizo kakhulu ezintweni ezifana nobunzima bokuhamba, ukuqina kwemisipha, kanye nobuthakathaka. Ukuzivocavoca kanye nokwelula umzimba kungasiza ekuthuthukiseni amandla, ibhalansi, kanye nokuhamba.
• Ukwelashwa Komsebenzi: Kwethula amasu nemishini yokusiza abantu ukuthi benze imisebenzi yansuku zonke (isib. ukugqoka, ukudla, ukubhala) ngokuzimela.
• Umuthi:
• Imithi yokuqina kwemisipha (ukuqaqamba).
• Umuthi wokukhathala.
• Umuthi wezinkinga zesinyi.
• Imithi yobuhlungu.
• Imithi yokucindezeleka noma ukukhathazeka.
• Ukwelashwa Ngenkulumo: Uma unenkinga yokukhuluma noma yokugwinya.
• Izinsiza Zokuhamba: Ungase udinge izinto ezifana nodondolo, i-walker, noma isihlalo sabakhubazekile.

Udokotela wakho uzochaza imiphumela emibi engaba khona yanoma yimuphi umuthi noma ukwelashwa ngaphambi kokuba uwuqale, ngakho ungesabi ukubuza noma yimiphi imibuzo onayo.

Ingabe ikhona indlela yokuvimbela i-PPMS?

Ngeshwa, ayikho indlela yokuvimbela i-MS (kufaka phakathi i-PPMS) ngoba imbangela eqondile ayaziwa.

Kodwa-ke, uma une-MS, kunezinto ezithile ongazenza ukuze unciphise inani lokuqubuka kwesifo (`ukubuyela emuva' - yize lokhu kungavamile ku-PPMS) futhi ulawule izinga lesi sifo esiba sibi ngalo:

• Ukuthatha imithi yokwelapha enqunywe udokotela (ikakhulukazi i-DMTs) njengoba nje udokotela ekuyalile.
• Ukulandela indlela yokuphila enempilo (ukudla kahle, ukulala kahle, ukuzivocavoca).
• Gwema ngokuphelele ukubhema.
• Ukuzama ukunciphisa ukucindezeleka ngangokunokwenzeka.

Hlobo luni lwezimo umuntu one-PPMS abhekana nazo?

I-PPMS yisimo esingamahlalakhona esingaba nomthelela omkhulu empilweni yakho yansuku zonke. Njengoba izimpawu ziba zimbi kakhulu, kungadingeka wenze izinguquko ezithile endleleni yakho yokuphila ukuze uzivikele futhi ugweme izingozi.

Cabanga nje, uma unenkinga yokuhamba wedwa, udinga ukukhuluma nodokotela wakho ngedivayisi yokuhamba njengesihlalo sabakhubazekile. Izinto ezinjengalezi zingaba nzima ukuzamukela ekuqaleni. Kodwa,Lawa madivayisi azokusiza ukuthi usebenze ngokuzimela futhi ugcine impilo yakho isebenza.

Ngaphezu kwemiphumela yomzimba ye-PPMS, ukuhlala nalesi sifo esingamahlalakhona kungaba nomthelela omkhulu empilweni yakho yengqondo. Kuvamile ukuzwa imizwa yokudabuka, intukuthelo, ukuphelelwa yithemba kanye nesizungu. Abanye abantu bathola impumuzo enkulu ngokukhuluma nochwepheshe wezempilo yengqondo , njengomeluleki noma udokotela wezifo zengqondo. Ngakho-ke, uma uzizwa unesidingo, ungangabazi ukucela usizo.

Khumbula, alikho ikhambi le-PPMS okwamanje. Kodwa-ke, ucwaningo luyaqhubeka ukuze kufundwe kabanzi ngayo futhi kutholakale izindlela zokwelapha ezintsha ezingakulethela impumuzo. Ngakho ungalilahli ithemba.

Izimpawu ze-PPMS ziba zimbi kangakanani ngokushesha?

Lona umbuzo abantu abaningi abawubuzayo. Kodwa-ke, wonke umuntu one-PPMS ubhekana nawo ngendlela ehlukile. Kwabanye abantu, izimpawu zingase ziwohloke kancane kancane, eminyakeni edlule. Kwabanye, izimpawu zingase ziwohloke ngokushesha.

Kunzima ukubikezela lokhu ngqo. Uma ubona noma yiziphi izinguquko ezisobala ezimpawu zakho, noma uma ziba zimbi ngokushesha, qiniseka ukuthi ukhuluma nodokotela wakho ngakho ngokushesha.

Ingakanani iminyaka yokuphila komuntu one-PPMS?

Lokhu kuyinto abantu abaningi abayesabayo. Kodwa-ke, i-PPMS ayithinti ngqo isikhathi sakho sokuphila. Okusho ukuthi, ukuba ne-PPMS akusho ukuthi isikhathi sokuphila somuntu sifushane kunesabanye.

Kodwa-ke, izinkinga ezinkulu zalesi sifo (isib. ukutheleleka okukhulu, izinkinga ezibangelwa ukuphumula embhedeni isikhathi eside) zingaba nomthelela osongela impilo uma zingaphathwa kahle. Ngakho-ke, kubaluleke kakhulu ukulandela iseluleko sezokwelapha nokunakekela impilo yakho.

Kufanele ngimbone nini udokotela?

Uma une-PPMS, kubalulekile ukuthi uhlolwe njalo ngudokotela. Ngaphezu kwalokho, bona udokotela uma:

• Uma izimpawu zakho ze-PPMS ziba zimbi kakhulu futhi zithinta impilo yakho yansuku zonke.
• Uma kusha, kuvela izinkinga ezinkulu njengokukhubazeka komzimba.
• Uma unezinhlungu ezingapheli noma ukungazweli ezithweni zakho, noma uma zikhula.
• Ngenxa yokuthi i-PPMS ingathinta ibhalansi yakho kanye nokuxhumana, uma uwa futhi uzilimaza, bona udokotela ngokushesha noma ushayele izinsizakalo eziphuthumayo.
• Uma umuthi owuthathayo ubanga imiphumela emibi .
• Uma uzizwa ugula ngengqondo (njengokucindezeleka, ukukhathazeka).

Yimiphi imibuzo okufanele ngiyibuze udokotela?

Uma uya kudokotela, kuwumqondo omuhle ukubhala phansi imibuzo onayo. Nazi ezinye izibonelo:

• Ingabe ngine-PPMS, noma olunye uhlobo lwe-MS? Ngingazi kanjani ngokuqinisekile?
• Ngingazilawula kanjani izimpawu zami? Yiziphi izinto ezithile engingayenza?
• Ungangincoma yini ukwelashwa ngokomzimba noma ukwelashwa ngokomsebenzi? Ngingazitholaphi lezo zinsizakalo?
• Yimiphi imithi ongincomayo? Iyini imiphumela yayo emibi? Kufanele ngiyithathe isikhathi esingakanani?
• Ingabe kuzodingeka ngisebenzise isihlalo sabakhubazekile noma enye idivayisi yokuhamba? Uma kunjalo, isikhathi esingakanani?
• Ingabe ngidinga ukushintsha indlela engidla ngayo?
• Yini okufanele ngiyenze ukuze nginakekele impilo yami yengqondo?

Umyalezo Wokugcina Wokuya Nasekhaya

I-PPMS, njengezinye izinhlobo ze-Multiple Sclerosis, yisifo esingaba nomthelela omkhulu empilweni yakho. Kuyiqiniso lokho. Kodwa ungakhathazeki, awuwedwa.

Khumbula, kunezindlela zokwelapha nezindlela ezingasiza ekunciphiseni ukuqhubeka kwezimpawu zakho futhi kuthuthukise ikhwalithi yempilo yakho.

Ekuqaleni, ungase ungaziboni izimpawu eziningi, kodwa ngokuhamba kwesikhathi, zingase zande. Kungase kudingeke usebenzise imishini efana nesihlalo sabakhubazekile ukuze ikusize uzulazule wedwa. Akusikho ukuphela komhlaba. Udokotela wakho, uchwepheshe wezokwelapha ngokomzimba, kanye nabanye abahlinzeki bezempilo bangakusiza endleleni. Bangakusiza ukuthi uphathe izimpawu zakho futhi bakuqondise ukuthi uphile impilo enempilo nesebenzayo ngangokunokwenzeka.

Ngakho-ke, hlala unethemba. Thola ulwazi. Buza imibuzo. Thola usizo oludingayo. Khuluma nomndeni wakho nabangani ngalokhu. Ukusekelwa kwabo nakho kuzoba amandla amakhulu kuwe.