Yintoni i-tuberous sclerosis kunye nendlela yokunyanga

Umxholo

• Iimpawu eziphambili
• 1. Ulusu
• 2. Ubuchopho
• 3. Intliziyo
• 4. Amaphaphu
• 5. Izintso
• Ithini iminyaka yobomi
• Unyango lwenziwa njani

I-Tuberous sclerosis, okanye isifo sika-Bourneville, sisifo esingaqhelekanga semfuza esibonakaliswa kukukhula okungaqhelekanga kwamathumba abuthathaka kumalungu ohlukeneyo omzimba anjengengqondo, izintso, amehlo, imiphunga, intliziyo nolusu, okubangela iimpawu ezinje ngokuxhuzula, ukulibaziseka kophuhliso okanye cysts kwizintso, kuxhomekeke kummandla ochaphazelekayo.

Esi sifo asinanyango, kodwa sinokunyangwa ngamayeza okunciphisa iimpawu, ezinje ngamachiza okulwa ukuxhuzula, umzekelo, nge-psychology, physiotherapy okanye iiseshoni zonyango emsebenzini, ukuphucula umgangatho wobomi.

Kukho esinye isifo esibangela iimpawu ezifanayo kunye nokukhula kwamathumba emzimbeni, nangona kunjalo, sichaphazela kuphela ulusu kwaye saziwa njenge-neurofibromatosis.

Iimpawu eziphambili

Iimpawu zesifo sokuqina kwemithambo ziyahluka ngokwendawo yamathumba:

1. Ulusu

• Amabala akhanyayo eluswini;
• Ukukhula kwesikhumba ngaphantsi okanye ngeenxa zonke isikhonkwane;
• Izilonda ebusweni, ezifana namabala;
• Amabala abomvu esikhumbeni, anokunyuka ngokobukhulu kunye nokuqina.

2. Ubuchopho

• Ukuxhuzula;
• Ukulibaziseka kophuhliso kunye nobunzima bokufunda;
• Ukusebenza kakhulu;
• Ubundlongondlongo;
• ISchizophrenia okanye i-autism.

3. Intliziyo

• Ubambo:
• Arrhythmia;
• Ukuziva uphefumla kancinci;
• Isiyezi;
• Ukufa;
• Iintlungu zesifuba.

4. Amaphaphu

• Ukukhohlela okungapheliyo;
• Ukuziva uphefumla kancinci.

5. Izintso

• Umchamo wegazi;
• Ukwanda rhoqo komchamo, ngakumbi ebusuku;
• Ukudumba kwezandla, iinyawo namaqatha.

Ngokubanzi, ezi mpawu zivela ngexesha lobuntwana kwaye ukuxilongwa kunokwenziwa kuvavanyo lwe-karyotype, i-cranial tomography kunye ne-magnetic resonance. Nangona kunjalo, kukho iimeko apho iimpawu zinokuba mnene kakhulu kwaye zingabonakali de kube mdala.

Ithini iminyaka yobomi

Indlela esikhula ngayo isifo sokuqina kwamathambo yahluka kakhulu, kwaye inokubonisa kuphela iimpawu ezimbalwa kwabanye abantu okanye ibe sisithintelo esikhulu kwabanye. Ukongeza, ubuzaza besifo buyahluka ngokwamalungu achaphazelekayo, kwaye xa sivela kwingqondo nakwintliziyo sihlala siba mandundu ngakumbi.

Nangona kunjalo, ixesha lokuphila lihlala liphezulu, njengoko kunqabile ukuba kuvele iingxaki ezinokubusongela ubomi.

Unyango lwenziwa njani

Unyango lwe-tuberous sclerosis lujolise ekunciphiseni iimpawu zesi sifo kunye nokuphucula umgangatho wobomi besigulana. Ke, kubalulekile ukuba umntu abekwe esweni kwaye abonisane rhoqo nengcali yonyango lwemithambo-luvo, nephrologist okanye ugqirha wentliziyo, umzekelo, ukubonisa olona nyango lulungileyo.

Ngamanye amaxesha, unyango lungenziwa ngamayeza okulwa ukuxhuzula, anje ngeValproate semisodium, Carbamazepine okanye iPhenobarbital, ukuthintela ukuxhuzula, okanye amanye amayeza, anjenge-Everolimo, ethintela ukukhula kwamathumba kwingqondo okanye kwizintso, umzekelo. umzekelo. Kwimeko yamathumba akhula eluswini, ugqirha unokuyalela ukusetyenziswa kweoyile kunye ne-Sirolimus, ukunciphisa ubukhulu bamathumba.

Ukongeza, i-physiotherapy, i-psychology kunye nonyango lomsebenzi kubalulekile ukunceda umntu ukuba akwazi ukumelana nesifo kwaye abe nomgangatho wobomi obungcono.