Yini i-tuberous sclerosis nokuthi ilashwa kanjani

-Delile

• Izimpawu eziyinhloko
• 1. Isikhumba
• 2. Ubuchopho
• 3. Inhliziyo
• 4. Amaphaphu
• 5. Izinso
• Siyini isikhathi sokuphila
• Yelashwa kanjani

I-Tuberous sclerosis, noma isifo sikaBourneville, isifo esivela kofuzo esingajwayelekile esivezwa ukukhula okungajwayelekile kwezimila ezinobungozi ezithweni ezahlukahlukene zomzimba ezinjengobuchopho, izinso, amehlo, amaphaphu, inhliziyo nesikhumba, okudala izimpawu ezifana nesifo sokuwa, ukubambezeleka kokukhula noma ama-cysts ezinso, kuya ngesifunda esithintekile.

Lesi sifo asinalo ikhambi, kepha singelashwa ngamakhambi okunciphisa izimpawu, njengezindlela zokulwa nokubanjwa, ngokwesibonelo, nge-psychology, physiotherapy noma izikhathi zokwelashwa emsebenzini, ukuze kuthuthukiswe izinga lempilo.

Kunesinye futhi isifo esidala izimpawu ezifanayo nokukhula kwezimila emzimbeni, kepha-ke, sithinta isikhumba kuphela futhi saziwa njenge-neurofibromatosis.

Izimpawu eziyinhloko

Izimpawu ze-tuberous sclerosis ziyahlukahluka ngokuya ngamathumba:

1. Isikhumba

• Amabala akhanyayo esikhunjeni;
• Ukukhula kwesikhumba ngaphansi noma eduze kwepikili;
• Izilonda ebusweni, ezifana nezinduna;
• Amabala abomvu esikhunjeni, angakhuphuka ngosayizi futhi aqine.

2. Ubuchopho

• Isifo sokuwa;
• Ukubambezeleka kwentuthuko nobunzima bokufunda;
• Ukungasebenzi kahle;
• Ulaka;
• Ischizophrenia noma i-autism.

3. Inhliziyo

• Ukushaya kancane;
• I-Arrhythmia;
• Ukuzwa ukuphefumula okuncane;
• Isiyezi;
• Ukuquleka;
• Ubuhlungu besifuba.

4. Amaphaphu

• Ukukhwehlela okuqhubekayo;
• Ukuzizwa uphelelwa umoya.

5. Izinso

• Umchamo onegazi;
• Ukwanda kwemvamisa yokuchama, ikakhulukazi ebusuku;
• Ukuvuvukala kwezandla, izinyawo namaqakala.

Ngokuvamile, lezi zimpawu zivela ngesikhathi sobuntwana futhi ukuxilongwa kungenziwa ngokuhlolwa kofuzo kwe-karyotype, i-cranial tomography kanye ne-resonance kazibuthe. Kodwa-ke, kukhona nezimo lapho izimpawu zingaba mnene kakhulu futhi zinganakwa kuze kube yilapho usumdala.

Siyini isikhathi sokuphila

Indlela i-tuberous sclerosis ekhula ngayo iyahlukahluka kakhulu, futhi ingakhombisa izimpawu ezimbalwa kuphela kwabanye abantu noma ibe ngumkhawulo omkhulu kwabanye. Ngaphezu kwalokho, ubucayi besifo nabo buyahlukahluka ngokuya ngesitho esithintekile, futhi uma sivela ebuchosheni nasenhliziyweni kuvame ukuba nzima kakhulu.

Kodwa-ke, isikhathi sokuphila ngokuvamile siphezulu, ngoba akuvamile ukuthi kuvele izinkinga ezingasongela impilo.

Yelashwa kanjani

Ukwelashwa kwe-tuberous sclerosis kuhlose ukunciphisa izimpawu zesifo nokwenza ngcono izinga lempilo lesiguli. Ngakho-ke, kubalulekile ukuthi umuntu abhekwe futhi axhumane njalo nesazi sezinzwa, i-nephrologist noma i-cardiologist, isibonelo, ukukhombisa ukwelashwa okuhle kakhulu.

Kwezinye izimo, ukwelashwa kungenziwa ngemithi elwa nokuquleka, njengeValproate semisodium, iCarbamazepine noma iPhenobarbital, ukuvikela ukuquleka, noma amanye amakhambi, njenge-Everolimo, evimbela ukukhula kwezimila ebuchosheni noma ezinso, ngokwesibonelo. isibonelo. Endabeni yamathumba akhula esikhunjeni, udokotela angahle anikeze ukusetshenziswa kwamafutha noSirolimus, ukunciphisa ubukhulu bezimila.

Ngaphezu kwalokho, i-physiotherapy, i-psychology kanye nokwelashwa emsebenzini kubalulekile ukusiza umuntu ukuthi akwazi ukubhekana kangcono nalesi sifo futhi abe nempilo engcono.