Isikhokelo seNgxoxo ngoGqirha: Yintoni omawuyibuze nge-PPMS

Umxholo

• 1. Ndiyifumene njani iPPMS?
• 2. Yahluke njani i-PPMS kwezinye iintlobo ze-MS?
• 3. Uyakuyixilonga njani imeko yam?
• 4. Zithini kanye kanye izilonda kwi-PPMS?
• 5. Kuthatha ixesha elingakanani ukufumanisa i-PPMS?
• 6. Kuya kufuneka ndihlolwe kangaphi?
• 7. Ngaba iimpawu zam ziya zisiba mbi?
• 8. Ngawaphi amayeza oza kuwayalela?
• 9. Ngaba lukhona olunye unyango olunokuzama?
• 10. Ndingenza ntoni ukulawula imeko yam?
• 11. Ngaba lukhona unyango lwe-PPMS?

Ukuxilongwa kwe-multiple sclerosis (PPMS) ephambili kunokuba nzima kakhulu ekuqaleni. Imeko ngokwayo inzima, kwaye zininzi izinto ezingaziwayo ngenxa yendlela i-multiple sclerosis (MS) ibonakalisa ngokwahlukileyo phakathi kwabantu.

Oko kwathiwa, ungathatha amanyathelo ngoku anokukunceda ukulawula i-PPMS ngelixa uthintela iingxaki ezinokuthi zifike kwindlela yakho yobomi.

Inyathelo lakho lokuqala kukuthetha ngokunyanisekileyo nogqirha wakho. Cinga ngokuzisa olu luhlu lwemibuzo eli-11 xa usonyulwa njengesikhokelo seengxoxo ze-PPMS.

1. Ndiyifumene njani iPPMS?

Isizathu ngqo se-PPMS, nazo zonke ezinye iintlobo ze-MS, asaziwa. Abaphandi bakholelwa ukuba imeko yendalo esingqongileyo kunye nemfuza zinokudlala indima kuphuhliso lwe-MS.

Ngokutsho kweNational Institute of Neurological Disorders and Stroke (NINDS), malunga neepesenti ezili-15 zabantu abane-MS banelungu elinye losapho elinesi sifo. Abantu abatshayayo banokufumana i-MS.

Ugqirha wakho usenokungakwazi ukukuxelela ukuba uyenze njani kanye kanye iPPMS. Nangona kunjalo, banokubuza imibuzo malunga nembali yakho yempilo kunye neyosapho ukuze ufumane umfanekiso opheleleyo.

2. Yahluke njani i-PPMS kwezinye iintlobo ze-MS?

I-PPMS yahlukile ngeendlela ezininzi. Imeko:

• kubangela ukukhubazeka msinyane kunezinye iindlela ze-MS
• ibangela ukudumba okuncinci ngokubanzi
• ivelisa izilonda ezimbalwa kwingqondo
• kubangela ezinye izilonda zomgogodla
• ihlala ichaphazela abantu abadala kamva ebomini
• kunzima ngakumbi ukufumanisa isifo

3. Uyakuyixilonga njani imeko yam?

I-PPMS inokuchongwa ukuba ubuncinci inesilonda sobuchopho, ubuncinci izilonda zomqolo, okanye isalathiso esiphakamileyo se-immunoglobulin G (IgG) kulusu lwakho lomqolo.

Kwakhona, ngokungafaniyo nezinye iindlela ze-MS, i-PPMS inokubonakala ukuba unezimpawu eziqhubeka zisiba mbi isithuba esingangonyaka ngaphandle kokuxolelwa.

Kwindlela yokubuyela kwakhona ye-MS, ngexesha lokuxakeka (i-flare-ups), inqanaba lokukhubazeka (iimpawu) liya lisiba mandundu, emva koko bahambe okanye basombulule inxenye ngexesha lokuxolelwa. I-PPMS inokuba namaxesha apho iimpawu zingabi mandundu, kodwa ezo mpawu azinciphi ukuya kumanqanaba angaphambili.

4. Zithini kanye kanye izilonda kwi-PPMS?

Izilonda, okanye iiplagi, zifumaneka kuzo zonke iintlobo ze-MS. Oku ikakhulu kwenzeka kwingqondo yakho, nangona bekhula ngakumbi kumqolo wakho kwi-PPMS.

Izilonda zikhula njengempendulo yokuvuvukala xa amajoni akho omzimba etshabalalisa i-myelin yayo. I-Myelin yindawo ekhuselayo ejikeleze iintsinga zemithambo-luvo. Ezi zilonda zikhula ngokuhamba kwexesha kwaye zifunyenwe kwiskena seMRI.

5. Kuthatha ixesha elingakanani ukufumanisa i-PPMS?

Ngamanye amaxesha ukuxilonga i-PPMS kungathatha ukuya kwiminyaka emibini okanye emithathu ubude kunokufumanisa ukuba i-MS ibuyisela kwakhona (i-RRMS), ngokwe-National Multiple Sclerosis Society. Oku kungenxa yokuntsokotha kwale meko.

Ukuba ufumene uxilongo lwe-PPMS, kusenokwenzeka ukuba kwavela kwiinyanga okanye nakwiminyaka yovavanyo kunye nokulandela.

Ukuba awukafumani ukuxilongwa kwifom ye-MS okwangoku, yazi ukuba kungathatha ixesha elide ukufumanisa isifo. Kungenxa yokuba ugqirha wakho kuya kufuneka ajonge kwii-MRIs ezininzi zokuchonga iipateni kwingqondo yakho nasemqolo.

6. Kuya kufuneka ndihlolwe kangaphi?

I-National Multiple Sclerosis Society icebisa i-MRI yonyaka kunye novavanyo lwe-neurological kube kanye ngonyaka.

Oku kuya kunceda ukufumanisa ukuba imeko yakho ibuyela umva okanye iyaqhubeka. Ukongeza, ii-MRIs zinokunceda ugqirha wakho ukuba atshatise ikhosi ye-PPMS yakho ukuze bacebise unyango olufanelekileyo. Ukwazi ukuqhubela phambili kwesi sifo kunokunceda ukuthintela ukuqala kokukhubazeka.

Ugqirha wakho uya kunika iingcebiso ezithile zokulandela. Kuya kufuneka uphinde ubatyelele rhoqo xa uqala ukuba neempawu eziba mandundu.

7. Ngaba iimpawu zam ziya zisiba mbi?

Ukuqala kunye nokuqhubela phambili kweempawu kwi-PPMS zihlala zivela ngokukhawuleza kunezinye iindlela ze-MS. Ke ngoko, iimpawu zakho zisenokungaguquguquki njengoko bezinokuphinda zibuyele kwisifo kodwa ziqhubeke zisiba mandundu.

Njengoko i-PPMS iqhubeka, kukho umngcipheko wokukhubazeka. Ngenxa yezilonda ezingaphezulu kumqolo wakho, i-PPMS inokubangela ubunzima bokuhamba. Unokufumana uxinzelelo olubi, ukudinwa, kunye nezakhono zokwenza izigqibo.

8. Ngawaphi amayeza oza kuwayalela?

Ngo-2017, uLawulo lwezoKutya kunye noLawulo lweziyobisi (i-FDA) lwamkele i-ocrelizumab (i-Ocrevus), iyeza lokuqala elikhoyo ekusetyenzisweni kunyango lwe-PPMS. Olu nyango lokuguqula isifo lukwamkelwe ukunyanga i-RRMS.

Uphando luyaqhubeka ukufumana amayeza aya kunciphisa iziphumo ze-neurological ze-PPMS.

9. Ngaba lukhona olunye unyango olunokuzama?

Ezinye iindlela zonyango kunye nezincedisayo ezisetyenziselwa i-MS zibandakanya:

• iyoga
• ukutshiza
• izongezo zemifuno
• biofeedback
• kwiyeza
• tai chi

Ukhuseleko nezinye iindlela zonyango luyinkxalabo. Ukuba uthatha nawaphi na amayeza, izongezo zemifuno zinokubangela ukuhlangana. Kuya kufuneka uzame i-yoga kunye ne-tai chi nomqeqeshi oqinisekisiweyo oqheleneyo ne-MS-ngale ndlela, banokukunceda uguqule ngokukhuselekileyo nayiphi na imeko njengoko kufuneka.

Thetha nogqirha wakho ngaphambi kokuzama amanye amayeza e-PPMS.

10. Ndingenza ntoni ukulawula imeko yam?

Ulawulo lwe-PPMS luxhomekeke kakhulu:

• kwimo yesiqhelo
• Uncedo lokuhamba
• ukutya okusempilweni
• ukwenza umthambo rhoqo
• inkxaso yemvakalelo

Ukongeza ekunikezeleni izindululo kwezi ndawo, ugqirha wakho unokukuthumela kwezinye iintlobo zeengcali. Oku kubandakanya i-Therapists yomzimba okanye yomsebenzi, iingcali zokutya, kunye neqela labaphandi.

11. Ngaba lukhona unyango lwe-PPMS?

Okwangoku, akukho lunyango lwalo naluphi na uhlobo lwe-MS-oku kubandakanya iPPMS. Injongo ke kukulawula imeko yakho ukukhusela ukwanda kweempawu kunye nokukhubazeka.

Ugqirha wakho uya kukunceda ufumane ikhondo elifanelekileyo lolawulo lwe-PPMS. Musa ukoyika ukwenza amadinga okulandelela ukuba uziva ngathi ufuna iingcebiso ezininzi zolawulo.