Kodi mukuyamba kutupa thupi lonse? Tiyeni tikambirane za Tuberous Sclerosis Complex (TSC)

Mwina munachita mantha mwadzidzidzi mutazindikira mawanga opepuka pathupi la mwana wanu. Kapena mwina munali ndi nkhawa ndi chizindikiro monga khunyu chomwe chimabwera popanda chifukwa. Izi nthawi zina zingakhale zizindikiro za matenda osazolowereka otchedwa Tuberous Sclerosis Complex (TSC). Choyamba, musachite mantha. Mukamvetsetsa bwino izi, mutha kukhala bwino ndi vutoli. Tiyeni tikambirane chilichonse mwachidule.

Mwachidule, kodi Tuberous Sclerosis Complex (TSC) ndi chiyani?

Taganizirani izi motere: maselo m'thupi lathu ali ngati ogwira ntchito. Amagawikana ndikukula akafunika kutero, kenako amasiya kugawikana akamaliza. Koma mwa munthu amene ali ndi TSC, pali vuto laling'ono mu ndondomekoyi lomwe limalamulira kugawikana kwa maselo amenewa. Choncho, m'malo moima pomwe akuyenera, maselowo amapitiriza kugawikana.

Maselo akamagawikana mopanda kulamulira mwanjira imeneyi, zotupa zimapangika m'mbali zosiyanasiyana za thupi, mwachitsanzo, mu ubongo, impso , mtima , mapapo , khungu, ndi maso. Chofunika kwambiri chomwe muyenera kudziwa apa ndichakuti zotupa izi si khansa . Koma zimatha kuyambitsa mavuto osiyanasiyana kutengera komwe zimayambira. Anthu pafupifupi miliyoni imodzi mpaka awiri miliyoni padziko lonse lapansi amakhala ndi vutoli. Nkhani yabwino ndi yakuti masiku ano pali mankhwala abwino oletsa zizindikirozi ndikuchepetsa zotupa.

Kodi chifukwa chenicheni cha TSC ndi chiyani?

Chifukwa chachikulu cha izi ndi kusintha (kusintha kwa majini) athu . Izi zitha kuchitika m'njira ziwiri.

1. Kusintha kwa majini mwachisawawa: Kwa anthu ambiri, pafupifupi magawo awiri pa atatu, TSC si yobadwa nayo. Imatha kuchitika chifukwa cha kusintha kwa majini mwachisawawa pamene maselo a mayi ndi abambo akumana kuti apange mwana, kapena pamene mwana akukula ngati mluza.

2. Cholowa kuchokera kwa makolo: Pafupifupi gawo limodzi mwa magawo atatu a anthu amalandira matendawa kuchokera kwa makolo awo. Ngati kholo limodzi lili ndi TSC, mwana wawo ali ndi mwayi wa 50% wopeza matendawa.

Kodi zizindikiro zake ndi ziti? Kodi ndi zofanana kwa aliyense?

Ayi. Zizindikiro za TSC zimasiyana kwambiri malinga ndi munthu. Ndipo zizindikirozi zimatha kusintha pakapita nthawi. Anthu ena amayamba kusonyeza zizindikiro nthawi yomweyo atangobadwa. Kwa ena, zimatha kuwonekera mochedwa. Zizindikiro zimadalira malo, kukula, ndi kuchuluka kwa zotupa.

Kuti timvetse mosavuta, tiyeni tiwone momwe izi zimakhudzira ziwalo zosiyanasiyana za thupi.

Kodi dokotala amazindikira bwanji matendawa molondola?

Popeza zizindikiro za matendawa zimasiyana kwambiri, nthawi zina zimakhala zovuta kuzizindikira. Dokotala wanu adzayamba walankhula nanu mosamala ndikukufunsani zambiri. Mwachitsanzo:

• Kodi kusiyana koyamba komwe munaona kunali kotani? Kunayamba liti?
• Kodi inu kapena mwana wanu munayamba mwadwalapo khunyu ? Nanga chimachitika n’chiyani mukakhala nalo? Kodi lakhala nthawi yayitali bwanji?
• Kodi mutu umapweteka kangati?
• Kodi pali wina aliyense m'banjamo amene ali ndi khunyu kapena TSC?

Pambuyo pake, dokotala adzayang'ana khungu lanu ndi maso anu ndipo adzakutumizirani kuti mukayesedwenso kangapo ngati pakufunika kutero.

• CT Scan : Ma X-ray angapo amagwiritsidwa ntchito kujambula zithunzi zamkati mwa thupi. Izi zingathandize kupeza zotupa.
• Kujambula kwa MRI : Izi zimatha kupanga zithunzi zomveka bwino komanso zatsatanetsatane kuposa kujambulidwa kwa CT. Zimathanso kuwona momwe madzi amayendera muubongo ndi msana. Nthawi zina utoto wapadera umayikidwa kuti zithunzizo ziwonekere bwino.
• Echocardiogram: Iyi ndi njira yoyesera mtima pogwiritsa ntchito ultrasound. Imatha kuwona ngati pali zotupa ndi kusintha kwina mumtima.
• Mayeso a majini: Mayeso awa, omwe amachitidwa ndi chitsanzo cha magazi, angatsimikizire motsimikiza ngati muli ndi TSC.

Kodi njira zochiritsira ndi ziti?

Chithandizo chimadalira zizindikiro zanu komanso komwe muli zotupa. Cholinga chachikulu cha madokotala ndikuwongolera zizindikiro zanu ndikukuthandizani kukhala ndi moyo wabwino.

• Kwa impso: Mankhwala (monga `everolimus`) amaperekedwa kuti aletse magazi kupita ku zotupa za impso kapena kuzichepetsa. Nthawi zina zotupazo zingafunike kuchotsedwa opaleshoni. Pa milandu yoopsa, dialysis kapena kusintha impso kungakhale kofunikira.
• Kwa ubongo: Zotupa zina mu ubongo zimatha kuchepetsedwa ndi mankhwala. Pali mankhwala apadera oletsa khunyu. Zotupa zina zimachotsedwa opaleshoni. Khunyu la mwana likachiritsidwa msanga, zingathandize kwambiri kukula kwa ubongo wake komanso luso lake lophunzira.
• Kwa mapapo: Anthu ena omwe ali ndi mavuto a mapapo amapatsidwa mankhwala omwe amakhudza chitetezo cha mthupi, monga sirolimus.
• Pakhungu: Matumbo ndi zilema pakhungu zimatha kukonzedwa ndi zinthu monga laser treatment (dermabrasion) zisanakule.

Zinthu zomwe muyenera kudziwa mukakhala ndi TSC

Kukhala ndi matenda osatha ngati amenewa kungakhale kovuta m'maganizo, koma ngati mutachita bwino, mungakhale ndi moyo wopambana.

• Dzisamalireni: Samalani kwambiri kusintha kwa thupi lanu. Uzani dokotala wanu nthawi yomweyo za zizindikiro zilizonse zatsopano. Imwani mankhwala anu pa nthawi yake ndipo musaphonye nthawi yokumana ndi dokotala wanu.
• Konzekerani zadzidzidzi: Lankhulani ndi dokotala wanu kuti mumuuze momveka bwino zomwe mungachite pakagwa mwadzidzidzi komanso nthawi yoti mupite ku ETU (Emergency Treatment Unit) .
• Lolani mwana wanu akhale mwana: Ngati mwana wanu ali ndi TSC, musaiwale kuti akadali mwana. Pangani malo omwe angathe kusewera, kuphunzira, ndikukhala osangalala.
• Thandizo lochokera kwa achibale ndi abwenzi: Lankhulani ndi achibale anu ndi abwenzi apamtima za vutoli. Afunseni momwe angakuthandizireni.
• Thanzi la maganizo: N'zachibadwa kumva kupsinjika maganizo ndi chisoni nthawi zina. Ngati mukumva chonchi, musazengereze kupempha thandizo kwa mlangizi.

Ngakhale kuti palibe mankhwala okwanira a TSC, ndi chithandizo choyenera komanso kuyang'aniridwa bwino, anthu ambiri omwe ali ndi vutoli akhoza kukhala moyo wabwinobwino, wokangalika, komanso wodziyimira pawokha.