Masifunde ngakumbi nge-Tuberous Sclerosis. Musa ukoyika, masithethe!

Ngamanye amaxesha ebomini bethu, siva ngezifo ezingenakucingelwa nezingaqhelekanga, akunjalo? Kaloku, isifo abantu abaninzi abangazange basive, kodwa kubalulekile ukwazi ngaso, yiTuberous Sclerosis Complex (TSC) , okanye iTuberous Sclerosis nje. Okwenzekayo apha kukuba iithumba ezingezizo umhlaza, okanye iithumba, zikhula kwiindawo ezahlukeneyo zomzimba wakho, ngakumbi kwiindawo ezifana nengqondo, ulusu, izintso, intliziyo, kunye nemiphunga. Esi sisifo semfuza. Kodwa ungakhathazeki, siza kuthetha ngayo yonke into ngokucacileyo nangokulula.

Yintoni kanye kanye iTuberous Sclerosis?

Ngamafutshane, i-tuberous sclerosis (TSC) sisifo esingaqhelekanga semfuza. Sinokubangela ukuba iithumba ezingezizo umhlaza zivele kwiindawo ezahlukeneyo zomzimba wakho, ezifana nengqondo yakho, ulusu, izintso, intliziyo, amehlo, kunye nemiphunga. Kubalulekile ukukhumbula ukuba ezi thumba azingomhlaza . Oku kuthetha ukuba azizo iithumba eziyingozi ezisasazeka ukusuka kwelinye icala lomzimba ukuya kwelinye. Nangona kunjalo, ezi thumba zinokubangela iingxaki ezahlukeneyo zempilo, kuxhomekeke kwindawo ezenzeka kuyo kunye nobukhulu bazo.

Abanye abantu abachaphazeleki kakhulu yile meko. Banokuphila ubomi obuqhelekileyo. Kodwa kwabanye, inokuba nzima ngakumbi kwaye inokukhokelela kwiingxaki ezahlukeneyo. Esi sifo sikhula kancinci kancinci. Ezinye iimpawu zisenokuqala besebancinci, kodwa ezinye zingathatha iminyaka ukuba zibonakale. Ke ngoko, umntu onesi sifo udinga iingcebiso zonyango kunye nokubekwa esweni ubomi bakhe bonke.

Ngubani ochaphazeleka kakhulu yile meko? Ixhaphake kangakanani?

I-Tuberous sclerosis (TSC) yimeko ekhoyo xa bezalwa . Malunga nesiqingatha sabantwana bafunyanwa benesi sifo xa bemalunga neenyanga ezisi-7 ubudala. Nangona kunjalo, ngamanye amaxesha iimpawu azibonakali kangako, kwaye zisenokungabonwa kangangeminyaka. Nokuba imeko ifunyaniswa besebancinci, iimpawu ezintsha zinokuvela njengoko bekhula.

Le meko inokuchaphazela nabani na, nokuba yindoda okanye ngumfazi, uhlanga, okanye iqela lohlanga. Oko kuthetha ukuba akukho qela lithile elichaphazeleka yiyo.

Khawuthelekelele indlela oku kungaqhelekanga ngayo oku. I-Tuberous sclerosis (TSC) sisifo esingaqhelekanga ngokwenene. Kukho abantu abamalunga nama-50,000 kuphela eMelika abanesi sifo. Ehlabathini lonke, kukho abantu abamalunga nesigidi. Ngoko ke ungacinga indlela oku kungaqhelekanga ngayo oku.

I-tuberous sclerosis (TSC) iyichaphazela njani umzimba?

Isiphumo esiphambili se-tuberous sclerosis (TSC) kukuba iiseli emzimbeni zikhula kunye zibe ngamaqhuma amancinci (ii-tumors). Oku kwenzeka rhoqo engqondweni . Ukongeza, unokufumana utshintsho kulusu lwakho, ingakumbi xa usemncinci kakhulu. Enyanisweni, olu tshintsho lolusu ludla ngokuba luphawu lokuqala lokuba umntu unesifo.

Ayipheleli apho, kodwa isifo se-tuberous sclerosis (TSC) sinokuchaphazela intliziyo yakho kunye nezintso. Kuqhelekile ukuba kubekho iintlobo ezahlukeneyo zamaqhuqhuva kwezi zitho. Akuvamile ukuba kubekho amaqhuqhuva kwezinye iindawo.

Zithini iimpawu? Zibonakala njani?

Iimpawu ze-tuberous sclerosis (TSC) zinokwahluka kakhulu ngokuxhomekeke kwilungu okanye inxalenye yomzimba echaphazelekayo. Iimpawu zinokwahlulwa zibe ngamaqela amathathu aphambili:

• Iimpawu ezinxulumene nobuchopho
• Iimpawu ezinxulumene nolusu
• Ezinye iinguqu zangaphakathi emzimbeni

Ngoku makhe sijonge nganye kwezi ngokwahlukeneyo.

Iimpawu ezinxulumene nobuchopho

Iimpawu ezinxulumene nobuchopho zenzeka xa iithumba okanye iityhubhu ze-cortical (hamartomas) zenzeka engqondweni ngenxa ye-tuberous sclerosis (TSC). Nangona ezi thumba zingengomhlaza, zinokubangela umonakalo engqondweni kwaye ziphazamise ukusebenza kwengqondo. Eminye imizekelo yile:

• I-Subependymal giant cell astrocytoma (SEGA) : Ezi ziithumba ezikhula phezu kobuchopho, ingakumbi phezu kobuso bemingxunya emincinci egcwele ulwelo (ii-ventricles) ngaphakathi kwengqondo. Ezi ngamanye amaxesha zinokuthintela ukuhamba kolwelo lwe-cerebrospinal, okubangela ukuba ulwelo luqokeleleke ngaphakathi nangaphandle kwengqondo. Le meko ibizwa ngokuba yi -hydrocephalus .
• Iityhubhu zeCortical (i-hamartomas) : Ezi ziiqoqo zeeseli ezingezizo umhlaza. Ezi qoqo zeeseli zakha ngaphakathi kwengqondo, kufutshane nendawo ezimele ukuba kuyo, kodwa ngendlela engaqhelekanga. Oku kungenxa yokuba iiseli ezininzi kakhulu zenziwe kwaye akukho ndawo yaneleyo yokuba zikhule.

Rhoqo, i-tuberous sclerosis (TSC) inokubangela ezinye izifo, ezineempawu ezinxulumene noko:

• Ukuxhuzula : Le yinto eqhelekileyo kakhulu.
• Ukulibaziseka kokukhula kunye nokukhubazeka kwengqondo : Umzekelo, umntwana unokuba nokulibaziseka ekuthetheni, ekuhambeni, njl. Ukukhubazeka kokufunda nako kunokwenzeka.
• Iimeko ezinxulumene nophuhliso lobuchopho: Iimeko ezinje nge- autism spectrum disorder okanye i-attention-deficit/hyperactivity disorder (ADHD) .

Nangona ukuxhuzula kunye neengxaki zengqondo zixhaphakile kwi-tuberous sclerosis (TSC), ayinguye wonke umntu onesifo onokuba nazo. Kunokwenzeka nokuba nokuxhuzula wedwa ngaphandle kweengxaki zengqondo.

Iimpawu ezinxulumene nolusu

Iimpawu zolusu zihlala ziluphawu lokuqala lwe-tuberous sclerosis (TSC). Iingcali zithi ama-90% abantu abanesifo bafumana enye okanye ngaphezulu kwezi zilandelayo:

• Amabala amagqabi othuthu : La ngamabala e-melanin eluswini.Iindawo ezinebala eliphantsi (umbala onika ulusu umbala walo). La mabala abonakala njengamagqabi angwevu. Ngamanye amaxesha, kunzima ukuwabona kubantu abanesikhumba esikhanyayo. La mabala akhanya phantsi kohlobo oluthile lokukhanya kwe-ultraviolet (UV) .
• Iimpawu zeConfetti : Ezi zifana namabala. Nangona kunjalo, nangona amabala aqhelekileyo emnyama kunesikhumba esijikelezileyo, la manqaku econfetti anombala okhanyayo kunesikhumba esijikelezileyo. Ezi zinokwenzeka nasebantwaneni.
• Iifibroma zobuso : Ezi zihluma ezingezizo umhlaza ezikhula eluswini lobuso. Xa zikhula zibe nkulu, okanye xa zininzi zisondelelene, zinokubonakala njengeemilo ezinkulu ezibizwa ngokuba "ziiplaque." Zinokuba mnyama ngombala kunolusu olujikelezileyo.
• Iifibroma zeenzipho zeminwe nezezinzwane : Ezi zifana neefibroma zobuso, kodwa zenzeka zijikeleze okanye zijikeleze iinzipho zeminwe nezezinzwane. Zihlala zibonakala ngexesha lokufikisa kwaye zinokukhula ubomi bonke.
• Amabala aluhlaza : La ngamaqhekeza ezicubu ezinemicu ezakheka phantsi komaleko ongaphandle wesikhumba (i-epidermis). Ahlala efumaneka kumqolo ongezantsi. Afana nolusu leorenji okanye i-grapefruit.

Khumbula, ukubona nje la mabala okanye amaqhuma eluswini lwakho akuthethi ukuba une-tuberous sclerosis. Kubalulekile ukuba uhlolwe ngugqirha.

Ezinye iinguqu zangaphakathi emzimbeni

Iithumba okanye ii-cysts ezenzeka kwi-tuberous sclerosis (TSC) zinokwenzeka nakwezinye iindawo ezininzi zomzimba. Ezinye iinguqu zinokwenzeka. Ezinye zazo zezi:

• Utshintsho lomlomo : Iifibroma (iithumba) zikhula ngaphakathi emlonyeni, kwaye amazinyo aqhekeke ngenxa yokulahlekelwa yi-enamel yamazinyo. Olu tshintsho kwi-enamel yamazinyo lubonakala phantse kuye wonke umntu one-TSC. Iintsini zinokuba buhlungu kwaye zophe ngenxa yamaqhuqhuva. Ukuqhekeka kwe-enamel kunokubangela ukuba kubekho imingxunya.
• Iintsholongwane zezintso : Xa ezi zikhula kwizintso, zinokuphazamisana nokusebenza kwezintso. Iimpawu zingabandakanya iintlungu emqolo okanye ecaleni, igazi emchameni, kunye namatye ezintso. Ngamanye amaxesha, ukungasebenzi kakuhle kwezintso kunye nohlobo lomhlaza wezintso olubizwa ngokuba yi-renal cell carcinoma nako kunokwenzeka.
• Iithumba ze-retina okanye imithambo-luvo ye-optic : Ezi thumba zinokubangela iingxaki zokubona, kodwa oku akuqhelekanga.
• Iithumba zentliziyo (i-cardiac rhabdomyomas) : Ezi zinzima kakhulu kwiintsana. Umngcipheko uyancipha xa zikhula. Iithumba ezinkulu zinokuthintela ukuhamba kwegazi entliziyweni, kodwa oku akuqhelekanga.
• Amaqhuqhuva emiphungeni : Ukuba la maqhuqhuva aba mandundu, anokubangela ubunzima bokuphefumla.

Yintoni ebangela i-tuberous sclerosis (TSC)?

I-Tuberous sclerosis (TSC) sisifo semfuza . Oku kuthetha ukuba sibangelwa lutshintsho (ukuguqulwa kwezakhi zofuzo) kwi-DNA yethu . Iiseli ezininzi emzimbeni wethu ziyahlukana kwaye zithatyathelw’ indawo ziiseli ezintsha. Le nkqubo ilawulwa ziiproteni ezithintela umhlaza.

Ezi proteni zilawula isantya apho iiseli zahlukana khona kunye nobukhulu beeseli. Khawucinge ukuba kwenzeka ntoni ukuba ezi proteni azilingani? Emva koko, iiseli ezinkulu kakhulu, ezininzi kakhulu, ziqala ukukhula. Xa zingenandawo yokuya, zikhula zingalawuleki kwaye zenze iithumba. Yiloo nto eyenzekayo kwi-tuberous sclerosis.

Ingaba le yinto evela kwizizukulwana ngezizukulwana?

Utshintsho lwezakhi zofuzo olubangela i-tuberous sclerosis (TSC) lunokwenzeka ngeendlela ezimbini:

• Ukungacwangciswanga : Ezi ziimpazamo ezingacwangciswanga ezenzeka emva nje kokumitha (oko kukuthi, emva kokuba isidoda neqanda zidibene ukuze zenze i-embryo). Kufana nokubhala incwadi eprintiweyo. Ezi zixhaphake kakhulu kunezehlo ezizuzwe njengelifa.
• Ilifa : Malunga nesinye kwisithathu sabaguli abane-tuberous sclerosis (TSC) bayizuza njengelifa kubazali babo.

Ifunyanwa njani isifo se-tuberous sclerosis (TSC)?

Iingcali zahlulahlula iimpawu zesifo zibe ziindidi ezimbini eziphambili: iimpawu eziphambili kunye neempawu ezincinci . Ukuze uchongwe ngokuqinisekileyo ukuba une-tuberous sclerosis (TSC), kufuneka ube neempawu ezimbini nangaphezulu. Ngenxa yokuba iimpawu zinokuvela ngokuhamba kwexesha, ugqirha angayihlela imeko yakho njenge "TSC enokwenzeka" ukuba unempawu enye kuphela okanye ezimbini ezincinci.

Iimpawu eziphambili

• Ubuncinane amabala amathathu amagqabi othuthu (indawo nganye kufuneka ibe nobubanzi obuyi-5 mm ubuncinane).
• Ukuba neefibroma ezimbini okanye i-fibroma plaque enye ebusweni/entloko.
• Ukuba ne-fibroma yeminwe okanye yeenzipho zeenyawo ubuncinane enye.
• Ukuba ne-shagreen patch enye ubuncinane.
• Ukuba nezilonda ezingaphezulu kwesinye kwi-retina.
• Ukubakho kwezicubu ezithile ezikhula ngaphakathi okanye phezu komphezulu wobuchopho.
• Uhlobo olukhethekileyo lokukhula entliziyweni.
• Ukuba nohlobo oluthile lwethumba elingelona umhlaza (ithumba elingelona umhlaza) elichaphazela imiphunga, izintso, okanye ii-lymph nodes.

Iimpawu ezincinci

• Isilonda sesikhumba seConfetti.
• Ukuba nemingxunya emine okanye ngaphezulu kwi-enamel yamazinyo.
• Ukuba namaqhuma amabini nangaphezulu emlonyeni.
• Amaqhuqhuva e-retina.
• Ukuba neentsholongwane ezingaphezulu kwesinye kwizintso.
• Amaqhuma angengomhlaza (ukukhula okungengobungozi) kwezinye izitho okanye iindawo.

Uvavanyo lokuxilonga

Ngenxa yokuba isifo se-tuberous sclerosis (TSC) sinokubangela iimpawu ezahlukeneyo kunye nemiphumo, kukho iimvavanyo ezininzi ezinokwenziwa. Ezi vavanyo ziya kwahluka ngokuxhomekeke kwiimpawu zakho. Ugqirha wakho unokuchaza ngcono ukuba zeziphi iimvavanyo ozifunayo kunye nesizathu sokuba zenziwe. Ngezantsi zezinye zezona vavanyo ziqhelekileyo zesifo se-tuberous sclerosis (TSC). Uvavanyo lwe-genetic linyathelo lokugqibela ekuqinisekiseni ukuxilongwa kwe-TSC kunye nokuchonga utshintsho oluthile kwi-gene ye-TSC.

Uvavanyo lweempawu ezinxulumene nobuchopho

Ukuba uneempawu ezinxulumene nengqondo, ingakumbi ukuba unesifo sokuxhuzula (okanye ukuba kukho ubungqina bokuba usenokuba nesi sifo sokuxhuzula), usenokuba nethuba elikhulu lokuba ne-diagnostic imaging kunye nezinye iimvavanyo. Ezi scans kunye novavanyo ziquka:

• I-CT scan (i-computed tomography - i-CT scan)
• Iskeni ye-MRI (Umfanekiso we-Magnetic resonance - Iskeni ye-MRI)
• I-EEG (i-Electroencephalogram - i-EEG) (Oku kuvavanya umsebenzi wombane wengqondo)

Ukuba ugqirha ukrokrela ukuba unesiphene sengqondo, banokucebisa uvavanyo oluthile lokuqonda. Olu vavanyo lunceda ekuchongeni iingxaki ngendlela esebenza ngayo ingqondo yakho kunye neenkqubo zokucinga. Ezi zihlala ziquka iingxaki okanye imisebenzi enxulumene nezinto ezifana nenkumbulo, ukugweba, kunye nokwenza izigqibo.

Uvavanyo lweempawu ezinxulumene nolusu

Uvavanyo lomzimba lubaluleke kakhulu ekuxilongweni kwe-tuberous sclerosis (TSC). Uninzi lweempawu zesi sifo zinokubonakala ebuntwaneni. Kukho iimvavanyo ezithile ezinokunceda ugqirha aqinisekise ukuba unayo na i-TSC. Ezona zixhaphakileyo zezi:

• Uvavanyo lwesibane sikaWood : Olu luvavanyo olungangenisi ntsholongwane olusebenzisa ukukhanya kwe-ultraviolet ukubona ukuba amabala amagqabi othuthu ayakhanya na.
• I-biopsy yolusu : Kuthathwa iqhekeza elincinci lesikhumba lize lihlolwe.

Uvavanyo lokutshintsha kwangaphakathi emzimbeni

Uvavanyo lwemfuza sisixhobo esibalulekileyo ekuxilongeni i-TSC. Phakathi kwama-75% nama-95% ezigulana zinenguqu kwi-TSC1 okanye kwi-TSC2 genes. Kunokwenzeka ukuba nesi sifo ngaphandle kwenguqu enokubonwa, kodwa oku kunqabile.

Uninzi lwezitshintsho ezinxulumene ne-TSC luqala xa umntu esakhula njengomntwana ongekazalwa esibelekweni. Oogqirha ngamanye amaxesha banokuzibona ezi nguqu ngexesha lonyango oluqhelekileyo lokukhulelwa, ingakumbi ngexesha lovavanyo lwe-ultrasound , okanye nge-CT okanye i-MRI scans ezenziwa emva nje kokuzalwa.

Ziziphi iindlela zonyango lwe-tuberous sclerosis (TSC)?

I-Tuberous sclerosis (TSC) ayinakunyangwa ngokupheleleyo . Nangona kunjalo,Uninzi lweemeko lunokunyangeka. Iindlela zonyango zihlala zixhomekeke kuhlobo lweempawu onazo. Iindlela zonyango ezisetyenziswa kakhulu zezi:

• Amayeza : Amayeza anokunceda kwiimpawu ezininzi ze-TSC. Amanye amayeza anokulawula iimpawu ezinxulumene nobuchopho, ezifana nokuxhuzula. Amanye amayeza anokunyanga iimpawu ezibangelwa ziithumba kunye nokukhula kwiindawo ezahlukeneyo zomzimba.
• Utyando : Kwezinye iimeko, utyando luyimfuneko ukususa iithumba eziye zavela emzimbeni.
• Unyango lwesikhumba : Olu hlobo lonyango lususa iindawo ezibonakalayo zamaqhuqhuva (ngokupheleleyo okanye ngokuyinxenye) eluswini okanye phantsi kwalo.

Amayeza

Ngokuxhomekeke kwiimpawu zakho, ugqirha wakho unokukunika amanye amayeza. Nangona kunjalo, la mayeza adla ngokuxhomekeka kwizinto ezininzi, njengeempawu zakho, imbali yempilo, iimfuno zakho, kunye nezinto ozithandayo.

Iindidi ezahlukeneyo zamayeza zinokunceda ekunyangeni iimpawu ze-TSC. Kukho amayeza acothisa, ayeke, okanye anciphise ukukhula kwamathumba. Elinye iyeza eliqhelekileyo lelo lithintela ukuxhuzula. Ukuxhuzula yenye yezona mpawu ziqhelekileyo neziyingozi ze-TSC.

Utyando

Ukukhula okwenzeka nge-TSC ngamanye amaxesha kunokubangela iingxaki, kuxhomekeke apho kwenzeka khona. Ngamanye amaxesha, kufuneka utyando ukuze kususwe ukukhula okubangela iingxaki kumalungu okanye kwiinkqubo ezahlukeneyo zomzimba. Ugqirha wakho angakuxelela okungakumbi malunga notyando kunye nezinye iindlela zonyango ezikhoyo kuwe.

Unyango lwesikhumba

Iimpawu ezininzi ze-TSC ziyabonakala. Oku kunokukwenza uzive uxhalabile, uneentloni, kwaye uneentloni. Ugqirha wesikhumba unokunceda ukunciphisa okanye ukuphelisa utshintsho lolusu oluza ne-TSC. Nangona olu nyango ludla ngokuba lolwexeshana, lunokwenza umahluko omkhulu kwimpilo yakho yengqondo.

Eminye imizekelo yonyango lwesikhumba kwiimpawu zesikhumba ezinxulumene ne-TSC ibandakanya:

• I-Cryoablation ( ukutshatyalaliswa kwezicubu ngokusebenzisa umkhuhlane omkhulu)
• Ukulungiswa kwesikhumba nge-laser (ukulungiswa kwesikhumba nge-laser )
• Ukususwa kwesikhumba okanye ukususwa kwesikhumba (ukukhuhla umphezulu wolusu)
• Ukususwa kwesisu ( utyando oluncinci, olufana nokususa uphawu lokuzalwa)
• Iigrafti zesikhumba

Iingxaki/iziphumo ebezingalindelekanga zonyango

Iziphumo ebezingalindelekanga okanye iingxaki zonyango lwe-TSC zahlukile kakhulu, ingakumbi kuba kukho iimpawu ezininzi ezahlukeneyo kunye neendlela zonyango. Ngenxa yesi sizathu, ugqirha wakho unokukuchazela ngcono ukuba zeziphi iziphumo ebezingalindelekanga okanye iingxaki onokuzifumana. Angakuxelela nokuba kuza kuthatha ixesha elingakanani ukuze uphile emva konyango.

Ngaba umngcipheko we-tuberous sclerosis (TSC) ungancitshiswa okanye ungathintelwa?

Enyanisweni, akukho ndlela yokuthintela i-tuberous sclerosis (TSC) . Ukuba umntu kusapho lwakho (umzali okanye umntakwenu) une-TSC, ingcebiso ngemfuza inokukunceda uqonde umngcipheko wokuba umntwana wakho afumane esi sifo njengelifa kwaye nokuba kukho na amanyathelo onokuwathatha ukunciphisa esi sifo. Iingcali zihlala zicebisa olu cebiso.

Yintoni onokuyilindela ukuba une-tuberous sclerosis (TSC)?

Abantu abaninzi abane-TSC bafuna uvavanyo lwemifanekiso rhoqo, ingakumbi ii-MRI scans, malunga nesinye okanye kabini ngonyaka. Oku kudla ngokuqala ebuntwaneni kwaye kuqhubeke de kube malunga neminyaka engama-21 ubudala. Abanye abantu bafuna ii-scan rhoqo ubomi babo bonke, nokuba kukujonga ukukhula okutsha okanye ukujonga ukukhula okukhoyo.

Iziphumo ze-TSC zingahluka kakhulu ngokuxhomekeke kubukhali bayo:

• Iimeko ezingembi kangako : Abantu abaneemeko ezingembi kangako banokufuna ukuthatha amayeza okanye bafumane unyango rhoqo, kodwa le meko ayichaphazeli kakhulu ubomi babo. Aba bantu ngokubanzi banokulindela ukuphila ubomi obufanayo nabantu abangenayo i-TSC.
• Amatyala aphakathi : Kwiimeko eziphakathi, iimpawu zinokubangela ukuphazamiseka okuthile. Nangona kunjalo, ngonyango kunye nonyango oluqhelekileyo, ezi ziphumo zinokulawulwa. Aba bantu banokulindela ubomi obuqhelekileyo okanye obufutshane kancinci.
• Iimeko ezimandundu : Aba bantu banokuba nokukhubazeka kwengqondo, isifo sokuwa esimandundu, okanye ezinye iingxaki. Abanye basenokungakwazi ukuphila ngokuzimela, okanye banokufuna unyango olunobuchule phantse ubomi babo bonke.

Ihlala ixesha elingakanani isifo se-tuberous sclerosis (TSC)?

I-Tuberous sclerosis (TSC) yimeko ehlala ihleli, ubomi bonke .

Ndingazinyamekela njani?

Ukuba ugqirha wakho ukunike amayeza, kufuneka uwathathe kanye njengoko uyalelwe. Musa ukuyeka ukuwathatha amayeza ngaphandle kokuthetha nogqirha wakho. Ukuwayeka ngequbuliso kunokunyusa umngcipheko wokuba iimpawu zakho zibuye okanye zibe mandundu.

Ezinye iindlela omele uzinyamekele ngazo zinokuhluka kumntu nomntu. Zininzi izinto ezichaphazela oku. Ugqirha wakho ngumntu ofanelekileyo ukukunika isikhokelo malunga noko umele ukwenze noko unokukwenza ukuze uzinyamekele kwaye ulawule imeko yakho.

Ndifanele ndimbone nini ugqirha?

Ukuba une-tuberous sclerosis (TSC), kuya kufuneka ubone ugqirha rhoqo ubomi bakho bonke. Oku kuvumela ugqirha wakho ukuba ajonge imeko yakho aze ajonge naluphi na utshintsho. Zombini ezi zinto zibaluleke kakhulu ukuthintela iingxaki ezinkulu ezinokwenzeka nge-TSC.

Ndingaya nini kwiSebe leeNgxamiseko (i-ETU) ?

Ngokuxhomekeke kwiimpawu zakho kunye nokuba ukuxhuzula kwakho kukuphi, kukho iimpawu ezithile ezibonisa ukuba udinga uncedo lwezonyango ngokukhawuleza. Enye yezona zixhaphakileyo zezi yiStatus Epilepticus (SE) .

I-SE kuxa unesithuthwane esihlala ixesha elingaphezulu kwemizuzu emihlanu, okanye isithuthwane esibini okanye ngaphezulu ngokulandelelanayo ungenalo ixesha lokuphola. I-SE yingxamiseko yezonyango esongela ubomi . Ukuba ukunye nomntu onesithuthwane kwaye unenye yezi mpawu, kufuneka utsalele umnxeba ku-911 (okanye inombolo yakho yongxamiseko yasekuhlaleni) ngoko nangoko.

Ezinye iimpawu ezifuna unyango zinokwahluka. Ugqirha wakho angakuchazela ngcono ukuba zeziphi iimpawu ekufuneka uzijonge kunye nento onokuyenza ukuba uyazibona okanye uyazibona.

Okokugqibela, izinto ekufuneka uzikhumbule

I-Tuberous sclerosis complex (TSC), okanye i-tuberous sclerosis, yimeko engaqhelekanga yemfuza ebangela ukuba ukukhula okungenamhlaza kukhule kwiindawo ezahlukeneyo zomzimba, ingakumbi ingqondo okanye ulusu.

Ungakhathazeki. Ngenxa yokuqhubela phambili kwezonyango zanamhlanje kunye nobuchwepheshe bokufota, le meko inokujongwa kwaye inyangwe njengoko kufuneka ubomi bonke. Abantu abaninzi abane-TSC banokuphila ubomi obude nobunempilo.

Ukuba uneminye imibuzo okanye iinkxalabo malunga noku, qiniseka ukuba uthetha nogqirha wakho. Ngabo banokukunika icebiso elichanekileyo nelingcono.

I- Tuberous sclerosis, izifo zemfuza, iithumba zobuchopho, amabala esikhumba, ukuxhuzula, ukulibaziseka kokukhula, unyango