Usenokuba woyika xa ngequbuliso wabona amabala ambalwa akhanyayo emzimbeni womntwana wakho. Okanye usenokuba ukhathazekile ngempawu efana nokuxhuzula okuvele ngaphandle kwesizathu. Ngamanye amaxesha ezi zinokuba ziimpawu zesifo esingaqhelekanga esibizwa ngokuba yiTuberous Sclerosis Complex (TSC). Okokuqala, musa ukoyika. Wakuba uyiqonda kakuhle le nto, ungaphila ngempumelelo nale meko. Masithethe ngayo yonke into ngokulula.
Ngamafutshane, yintoni iTuberous Sclerosis Complex (TSC)?
Cinga ngale ndlela: iiseli emizimbeni yethu zifana nabasebenzi abasebenza. Ziyahlukana kwaye zikhule xa kufuneka, zize ziyeke ukwahlukana xa zigqibile. Kodwa kumntu one-TSC, kukho isiphene esincinci kwinkqubo elawula la maqhekeza eeseli. Ngoko ke, endaweni yokuma apho kufuneka khona, iiseli ziyaqhubeka nokwahlukana.
Xa iiseli zahlukana ngokungalawulekiyo ngale ndlela, iithumba ziyavela kwiindawo ezahlukeneyo zomzimba, umzekelo, engqondweni, kwizintso , entliziyweni , emaphaphu , kulusu, namehlo. Eyona nto ibalulekileyo ekufuneka uyazi apha kukuba ezi thumba azingomhlaza . Kodwa zinokubangela iingxaki ezahlukeneyo kuxhomekeke ekubeni zakheke phi. Malunga nesigidi ukuya kwizigidi ezibini zabantu kwihlabathi liphela baphila nale meko. Iindaba ezimnandi zezokuba kukho unyango oluhle namhlanje lokulawula ezi mpawu kunye nokunciphisa iithumba.
Yintoni unobangela okhethekileyo we-TSC?
Isizathu esiphambili soku kukutshintsha (ukuguqulwa) kwezakhi zofuzo zethu . Oku kunokwenzeka ngeendlela ezimbini.
1. Utshintsho olungaqhelekanga lwemfuza: Kubantu abaninzi, malunga nesibini kwisithathu, i-TSC ayizuzwa njengelifa. Ingabangelwa lutshintsho olungaqhelekanga kwimfuza xa iiseli zikamama notata zidibana ukuze zenze umntwana, okanye xa umntwana esakhula njengemveku.
2. Ilifa elivela kubazali: Malunga nesinye kwisithathu sabantu sifumana esi sifo kubazali babo. Ukuba omnye umzali une-TSC, umntwana wabo unethuba elingama-50% lokufumana esi sifo.
Zithini iimpawu? Ngaba ziyafana kubo bonke abantu?
Hayi. Iimpawu ze-TSC zahlukile kakhulu kumntu nomntu. Kwaye ezi mpawu zinokutshintsha ngokuhamba kwexesha. Abanye abantu baqala ukubonisa iimpawu phantse kwangoko emva kokuzalwa. Kwabanye, zinokuvela kamva ebomini. Iimpawu zixhomekeke kwindawo, ubungakanani, kunye nenani lamathumba.
Ukuze kube lula ukuqonda, makhe sibone indlela oku okuchaphazela ngayo amalungu ahlukeneyo omzimba.
| Inxalenye yomzimba echaphazelekayo | Iimpawu ezinokwenzeka |
|---|---|
| Ulusu | Ezi zezona mpawu zixhaphakileyo. Ungabona izinto ezifana namabala anombala okhanyayo emzimbeni (ii-hypopigmented macules), amaqhuma abomvu, afana ne-acne ebusweni (ii-facial angiofibromas), amabala esikhumba aqinileyo ebunzini, kunye namaqhuma amancinci ajikeleze iinzipho. |
| Ingqondo | Ukuxhuzula kuqhelekile kwiithumba zobuchopho. Utshintsho kwindlela yokuziphatha (ukuqhuma rhoqo komsindo, ixhala), iingxaki zokulala, iintloko ezibuhlungu, isicaphucaphu, kunye nokulibaziseka kokukhula okufana ne-autism kunokwenzeka. |
| Izintso | Xa kuvela iithumba ezintso, ukusebenza kwazo kunokuphazamiseka. Iimeko ezifana noxinzelelo lwegazi oluphezulu kunye nokopha ngaphakathi zinokwenzeka. |
| Intliziyo | Iithumba zentliziyo zihlala zikhula ebuntwaneni kwaye zinciphe njengoko sikhula. Nangona kunjalo, ngamanye amaxesha zinokubangela ukubetha kwentliziyo okungaqhelekanga (i-arrhythmias) okanye ukuvaleka kokuhamba kwegazi. |
| Imiphunga | Iithumba zemiphunga zinokubangela ukuphefumla okufutshane nokuba kusenziwa umthambo omncinci. Ukukhohlela okanye ukuwohloka kwemiphunga kunokubakho. |
| Amehlo | Iithumba ezingaphakathi kwamehlo zinokubangela ukubona okufipheleyo okanye ukubona kabini. |
Ugqirha ufumanisa njani esi sifo kanye kanye?
Ngenxa yokuba iimpawu zesi sifo zahlukene kakhulu, ngamanye amaxesha kunokuba nzima ukuxilonga. Ugqirha wakho uza kuqala athethe nawe ngononophelo aze akubuze ngeenkcukacha. Umzekelo:
- Yintoni umahluko wokuqala owubonileyo? Uqale nini?
- Ngaba wena okanye umntwana wakho nikhe nafumana isifo sokuxhuzula ? Kwenzeka ntoni xa nisifumana? Kudlule ixesha elingakanani?
- Uhlala uphathwa yintloko ebuhlungu kangaphi?
- Ngaba kukho omnye umntu kusapho onesifo sokuxhuzula okanye i-TSC?
Emva koko, ugqirha uza kuhlola ulusu lwakho namehlo akho aze akuthumelele ezinye iimvavanyo ukuba kuyimfuneko.
- I-CT Scan : Uthotho lwee-X-rays lusetyenziswa ukuthatha imifanekiso eneenkcukacha zangaphakathi lomzimba. Oku kunokunceda ekufumaneni amathumba.
- I-MRI Scan: Oku kunokuvelisa imifanekiso ecacileyo neneenkcukacha ezingaphezulu kune-CT scan. Kunokujonga nokuhamba kolwelo engqondweni nakwi-spinal cord. Ngamanye amaxesha kufakwa idayi ekhethekileyo ukuze imifanekiso icace ngakumbi.
- I-Echocardiogram: Olu luvavanyo lwe-ultrasound yentliziyo. Lunokujonga iithumba kunye nolunye utshintsho entliziyweni.
- Uvavanyo lweGene: Olu vavanyo, olwenziwa ngesampuli yegazi, lunokuqinisekisa ngokuqinisekileyo ukuba unayo na i-TSC.
Ziziphi iindlela zonyango?
Unyango luxhomekeke kwiimpawu zakho kunye nendawo ezikuyo iithumba. Injongo ephambili yoogqirha kukulawula iimpawu zakho nokukunceda uphile ubomi obutofotofo.
- Kwizintso: Amayeza (afana ne-`everolimus`) anikwa ukuthintela ukuhamba kwegazi kwiithumba zezintso okanye ukuwanciphisa. Ngamanye amaxesha iithumba zinokufuneka zisuswe ngotyando. Kwiimeko ezinzima, i-dialysis okanye ukufakelwa kwezintso kunokufuneka.
- Kwingqondo: Ezinye iithumba ezikwingqondo zinokwenziwa zibe ncinci ngamayeza. Kukho amayeza akhethekileyo okulawula ukuxhuzula. Ezinye iithumba zisuswa ngotyando. Xa ukuxhuzula komntwana kunyangwa kwangethuba, kunokunceda kakhulu ekuphuhliseni ingqondo yakhe kunye nokukwazi kwakhe ukufunda.
- Kwimiphunga: Abanye abantu abaneengxaki zemiphunga banikwa amayeza achaphazela inkqubo yomzimba yokuzikhusela, njenge-sirolimus.
- Kwesikhumba: Amaqhuma kunye neziphene zesikhumba zinokucocwa ngezinto ezifana nonyango lwe-laser (dermabrasion) ngaphambi kokuba zibe nkulu.
Eyona nto ibalulekileyo kukuhlala unxibelelana rhoqo nogqirha wakho ukuze akwazi ukwenza isicwangciso sonyango esikufaneleyo.
Izinto ekufuneka uzazi xa uhlala ne-TSC
Ukuphila nesifo esingapheliyo esifana nesi kunokuba nzima engqondweni, kodwa ukuba ulawulwa kakuhle, ungaphila ubomi obunempumelelo.
- Zikhathalele: Nika ingqalelo engakumbi kutshintsho olusemzimbeni wakho. Xelela ugqirha wakho ngoko nangoko malunga nazo naziphi na iimpawu ezintsha. Sela amayeza akho ngexesha kwaye ungaphoswa ziintlanganiso zikagqirha wakho.
- Lungela imeko engxamisekileyo: Thetha nogqirha wakho ukuze ucacelwe ngento omawuyenze xa kukho imeko engxamisekileyo kunye nexesha lokuya kwi-ETU (iYunithi yoNyango oluNgxamisekileyo) .
- Vumela umntwana wakho abe ngumntwana: Ukuba umntwana wakho une-TSC, ungalibali ukuba usengumntwana. Yenza indawo apho anokudlala khona, afunde, aze onwabe.
- Inkxaso evela kusapho nakubahlobo: Thetha nosapho lwakho kunye nabahlobo abasondeleyo ngale meko. Babuze ukuba banokukunceda njani.
- Impilo yengqondo: Kuqhelekile ukuziva uxinezelekile kwaye ulusizi ngamanye amaxesha. Ukuba uziva ngolu hlobo, ungathandabuzi ukufuna uncedo kumcebisi.
Nangona kungekho nyango lupheleleyo lwe-TSC, ngonyango olufanelekileyo nolawulo, uninzi lwabantu abanale meko banokuphila ubomi obuqhelekileyo, obusebenzayo, nobokuzimela.
Umyalezo Wokuya Ekhaya
- I-Tuberous Sclerosis Complex (TSC) yimeko yemfuza ebangela ukuba iithumba ezingezizo ezomhlaza zivele kwiindawo ezahlukeneyo zomzimba.
- Iimpawu zahluka kakhulu kumntu nomntu. Ukurhawuzelelwa lusu, ukuxhuzula, kunye nokulibaziseka kokukhula zizinto eziqhelekileyo.
- Nangona kungekho nyango lupheleleyo loku, kukho unyango olusebenzayo namhlanje olunokulawula iimpawu, lunciphise amathumba, kwaye lukuncede uphile ubomi obuqhelekileyo.
- Ukuba ubona naluphi na utshintsho olungaqhelekanga emzimbeni wakho okanye womntwana wakho, bona ugqirha wakho ngokukhawuleza ukuze akunike icebiso.
- Ngonyango olufanelekileyo nolawulo, abantu abaninzi abane-TSC banokuphila ubomi obusebenzayo, obuzimeleyo, nobunelisayo.
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