Kodi muli ndi zizindikiro zachilendo za khungu lanu kapena dongosolo lanu la mitsempha? Tiyeni tiphunzire za (Neurocutaneous Syndrome) iyi!

Kodi munayamba mwaonapo kuti anthu ena ali ndi mawanga kapena ziphuphu zachilendo pakhungu lawo? Nthawi zina izi sizingakhale vuto la khungu lokha. Lero tikambirana za gulu la matenda omwe ndi ovuta pang'ono, koma ofunikira kwambiri kudziwa. Timatcha awa matenda a neurocutaneous syndromes . Ngakhale dzinalo lingamveke loopsa pang'ono, tiyeni timvetse mosavuta.

Kodi matenda a neurocutaneous syndromes awa ndi ati?

Mwachidule, matenda a neurocutaneous syndromes ndi gulu la matenda omwe amakhudza khungu lathu ndi dongosolo lathu la mitsempha (ndiko kuti, ubongo, msana, ndi mitsempha). Matendawa angayambitse zotupa m'mbali zosiyanasiyana za thupi, makamaka khungu ndi dongosolo la mitsempha. Zina mwa zotupazi zimatha kukhala khansa, pomwe zina sizingakhale khansa (kungoti ziphuphu).

Chofunika kwambiri ndichakuti matenda amenewa ndi obadwa nawo. Izi zikutanthauza kuti munthu amabadwa ndi vutoli. Komabe, nthawi zina zizindikiro zingatenge nthawi kuti ziwonekere, nthawi zina ali wachinyamata kapena ngakhale mochedwa. Gulu la matenda amenewa limatchedwanso Phakomatoses . Popeza dzina limenelo si lofala kwambiri, tiyeni tikumbukire kuti limatchedwa neurocutaneous syndrome.

Kodi zochitika zimenezi n’zofala bwanji?

Ndipotu, gulu la matenda otchedwa neurocutaneous syndromes ndi losowa kwambiri . Komabe, ena mwa iwo amapezeka kawirikawiri kuposa ena. Mwachitsanzo:

• Matenda a Neurofibromatosis mtundu 1 (NF1): Uwu ndi matenda ofala kwambiri m'gululi. Amakhudza pafupifupi munthu m'modzi pa anthu 3,000 aliwonse .
• Matenda a Neurofibromatosis amtundu wachiwiri (NF2): Izi sizichitika kawirikawiri. Zimakhudza pafupifupi munthu m'modzi pa anthu 25,000 .
• Matenda a Tuberous Sclerosis : Izi sizichitika kawirikawiri, zimakhudza munthu m'modzi mwa anthu 6,000 .

Mukuona? Izi sizili zofala ngati matenda a tsiku ndi tsiku. Koma ngati inu kapena munthu amene mumamudziwa ali ndi vuto ngati ili, ndikofunikira kwambiri kudziwa za izi.

Kodi zizindikiro za matenda a neurocutaneous ndi ziti?

Zizindikiro zazikulu za matendawa ndi kukula kosazolowereka kapena ziphuphu pakhungu ndi m'mitsempha . Kuwonjezera pa izi, matendawa amathanso kukhudza mafupa athu (ndiko kuti, mafupa athu) ndi ziwalo zina m'thupi. Chifukwa chake, zizindikiro monga:

• Mavuto olinganiza bwino mukamayenda (kumva ngati mukutaya mphamvu yanu).
• Kulephera kumva (kuchepa kwa kumva).
• Mavuto a masomphenya (mavuto osiyanasiyana okhudza masomphenya).

Komabe, si matenda onse a neurocutaneous omwe ali ndi zizindikiro zofanana. Zizindikiro zimasiyana malinga ndi matendawo. Tiyeni tiwone zitsanzo zingapo:

• Incontinentia Pigmenti (IP): Imeneyi ndi vuto lomwe ziphuphu zimayamba ngati matuza pakhungu kenako n’kukhala ziphuphu ngati chilonda . Nthawi zina, izi zimathanso kutsagana ndi mavuto a mitsempha. Tangoganizirani mwana wamng’ono amene mwadzidzidzi amatuluka matuza pakhungu lake, kenako n’kuuma, n’kusiya malo achilendo.
• Mtundu woyamba wa Neurofibromatosis (NF1): Izi nthawi zambiri zimayambitsa kukula kwa minofu yofewa yopanda khansa . Kusintha kwa mtundu wa khungu, monga zizindikiro zofiirira zobadwa nazo (zomwe zimatchedwanso mawanga a café-au-lait) ndi mawanga ang'onoang'ono m'makwinya a khungu (monga m'khwapa ndi m'mimba), kumatha kuchitika. Nthawi zina, kukula kumatha kuchitikanso m'maso.
• Mtundu wa Neurofibromatosis 2 (NF2): Matendawa amayambitsa makamaka ma neuromas a acoustic , omwe angayambitse mavuto a masomphenya, kumva, ndi zizindikiro zofiirira zoyera.
• Schwannomatosis : Izi zingayambitse zizindikiro monga dzanzi, kufooka kwa minofu, kulephera kumva, komanso kupweteka kwambiri .
• Matenda a Sturge-Weber : Uwu ndi mkhalidwe womwe utoto waukulu, wofiira wakuda, wa port-wine umaonekera mbali imodzi ya nkhope. Ungayambitsenso kusintha kwa mitsempha yamagazi muubongo ndi glaucoma , matenda omwe amayambitsa kupanikizika kwambiri m'maso. Anthu ena amathanso kugwidwa ndi khunyu komanso kulumala kwa nzeru.
• Matenda a Tuberous Sclerosis : Matendawa nthawi zambiri amayambitsa mavuto mu ubongo, maso, khungu, mtima, ndi mapapo . Chizindikiro chachikulu ndi kukula kwa ziphuphu zomwe sizili khansa m'ziwalo zosiyanasiyana.
• Matenda a Von Hippel-Lindau : Izi zingayambitse zotupa zotchedwa hemangioblastomas ndi angiomas m'matenda a adrenal , maso, ubongo, ndi impso.

Mukamvetsera kufotokozera kumeneku, mwina mukumvetsa momwe matenda awa alili osiyanasiyana komanso ovuta. Ndicho chifukwa chake ndikofunikira kufunafuna upangiri wachipatala nthawi yomweyo ngati muli ndi zizindikirozi.

Kodi matenda a neurocutaneous angayambitse mavuto?

Inde, mwatsoka, anthu omwe ali ndi matenda a neurocutaneous syndromes ali pachiwopsezo chachikulu chotenga mitundu ina ya khansa . Kuphatikiza apo, pali chiopsezo cha zovuta zina chifukwa cha matendawa. Zina mwa izo ndi:

• Kuchedwa kwa chitukuko`(Kuchedwa kwa chitukuko)`: Kulephera kuona kukula koyenera msinkhu, makamaka kwa ana aang'ono.
• Khunyu : Izi zikutanthauza khunyu .
• Mutu : Mutu wopweteka pafupipafupi, nthawi zina woopsa.
• Kuthamanga kwa magazi (BP).
• Zovuta pakuphunzira .
• Mitundu yosiyanasiyana ya zotupa : Izi zitha kukhala khansa kapena ayi.

Choncho, ndikofunikira kwambiri kuti munthu amene ali ndi vutoli aziyang'aniridwa ndi dokotala nthawi zonse.

Kodi n’chiyani chimayambitsa matenda a neurocutaneous?

Matenda a neurocutaneous awa amayamba chifukwa cha kusintha kwina (kusintha kwa majini ) m'thupi lathu. Taganizirani izi motere: thupi lathu lili ngati pulani yayikulu, ndipo majini ndi malangizo omwe ali mu pulaniyo. Ngati pali kusintha pang'ono m'malangizo awa, kungakhudze momwe thupi limagwirira ntchito.

Nthawi zina, kusintha kwa majini kumeneku kumachokera kwa makolo kupita kwa ana . Izi zikutanthauza kuti kumatha kuperekedwa kuchokera ku mibadwomibadwo. Koma, sizili choncho nthawi zonse. Nthawi zina, kusintha kwa majini kumeneku kungachitike popanda chifukwa chomveka, popanda mbiri ya banja . Zili ngati lotale, simudziwa yemwe adzazilandire.

Kodi madokotala amazindikira bwanji matenda amenewa?

Kuzindikira matenda amenewa kungakhale kovuta pang'ono, chifukwa zizindikiro zake zimasiyana.

Kwa ana aang'ono , madokotala nthawi zambiri amayamba ndi "kupita ku chipatala cha ana abwinobwino ". Kumeneko, dokotala amakufunsani (kholo) za zizindikiro za mwana wanu ndikuyang'ana ngati mwana wanu akukwaniritsa " zigawo zofunika pakukula kwa mwana" (monga ngati akuchita zinthu zogwirizana ndi msinkhu wawo, monga kumwetulira, kukwawa, ndi kuyenda).

Zizindikiro mwa akuluakulu zimatha kuonekera akakula. Ngakhale zili choncho, dokotala wanu adzakufunsani za zizindikiro zanu ndikukuyesani.

Ngati dokotala akukayikira kuti pali vuto la neurocutaneous syndrome, adzakulangizani mayeso ena angapo apadera .

Ndi mayeso amtundu wanji omwe amagwiritsidwa ntchito pozindikira izi?

Madokotala nthawi zambiri amagwiritsa ntchito mayeso a magazi ndi mayeso osiyanasiyana ojambulira kuti adziwe matenda awa. Dokotala wanu angakulangizeni mayeso monga awa:

• Kujambula kwa CT
• EEG (Electroencephalogram - EEG): Izi zimayesa ntchito yamagetsi ya ubongo, makamaka kuti ziwone ngati pali matenda monga khunyu.
• Mayeso a mu labotale : Izi zitha kukhala mayeso a magazi kapena mkodzo.
• Kujambula kwa MRI `(MRI)`
• biopsy ya khungu kapenaKufufuza za chotupa: Izi zimaphatikizapo kutenga chitsanzo chaching'ono cha khungu kapena chotupa ndikuchiyang'ana pansi pa maikulosikopu.

Dokotala akhoza kupeza matenda enieni pogwiritsa ntchito mfundo zomwe zapezeka kuchokera ku mayesowa.

Kodi matenda a neurocutaneous syndromes amenewa amachiritsidwa bwanji?

Chofunika kwambiri n'chakuti, palibe chithandizo chomwe chingachiritse matenda a neurocutaneous awa kwathunthu .

Izi zingamveke zomvetsa chisoni kumva, koma musataye mtima. Ngakhale kuti matenda amenewa sangachiritsidwe, zizindikiro zomwe zingabwere zimatha kuchiritsidwa . Izi zikutanthauza kuti, ngati pali ululu chifukwa cha chotupa, pali khunyu, pali mavuto a pakhungu, ndi zina zotero, chithandizo chimaperekedwa ku chizindikiro chilichonse.

Cholinga chachikulu cha chithandizo ndi kusunga moyo wa wodwalayo momwe angathere komanso kuwongolera kubuka kwa zovuta.

Ngati mwana wanga ali ndi vutoli, ndingamuthandize bwanji?

Monga kholo, mungakhale mukumva chisoni kwambiri mukazindikira kuti mwana wanu ali ndi matenda a neurocutaneous syndrome. Zimenezo n'zachibadwa. Chofunika kwambiri ndichakuti ana awa adzafunika chisamaliro chapadera ndi kuyang'aniridwa ndi dokotala m'miyoyo yawo yonse . Lankhulani ndi dokotala wanu kuti mudziwe momwe mungasamalire zizindikiro za mwana wanu. Ganiziraninso zinthu izi:

• Pitani kwa akatswiri aliwonse omwe dokotala wanu akulangizani.
• Pezani chithandizo cha khansa chomwe chikukulimbikitsani pa nthawi yake.
• Ngati mwana wanu akupeza zizindikiro zatsopano , dziwitsani dokotala nthawi yomweyo.

Kukhala ndi mavuto amenewa kungakhale kovuta, koma ndi uphungu woyenera wa zachipatala ndi chisamaliro chachikondi, mavuto amenewo akhoza kuthetsedwa.

Ngati mwana wanga ali ndi vutoli, ndi akatswiri ati omwe ayenera kuwaona?

Mwana amene ali ndi vuto la mitsempha ya m'mitsempha angafunike thandizo la akatswiri angapo. Dokotala wa banja lanu angakonze kuti mukumane ndi akatswiriwa. Akatswiri omwe amafunikira kwambiri ndi awa:

• Katswiri wa zakumva : Kwa mavuto a kumva.
• Dokotala wa khungu : Kwa mavuto a khungu.
• Katswiri wa mitsempha : Kwa mavuto okhudzana ndi dongosolo la mitsempha.
• Dokotala wa maso : Kwa mavuto okhudzana ndi maso.

Ndi chithandizo cha anthu onsewa kuti njira yabwino kwambiri yothandizira mwana ikhoza kupangidwa.

Ngati ine kapena mwana wanga ali ndi vutoli, ndiyenera kuyembekezera chiyani?

Ngati inu kapena mwana wanu muli ndi matenda a neurocutaneous, muyenera kukaonana ndi dokotala nthawi zonse.Mungafunike kupita. Izi zimachitika kuti muwone ngati pali ziphuphu kapena kusintha kwa zizindikiro zanu. Kambiranani momasuka ndi dokotala wanu za zomwe mungayembekezere kutengera matenda anu a neurocutaneous.

Kodi matenda a neurocutaneous awa angachiritsidwe?

Ayi, monga tanenera kale, palibe mankhwala a matenda a mitsempha. Komabe, gulu lanu lachipatala lingakuthandizeni kuthana ndi zizindikiro zomwe zikukukhudzani inu kapena mwana wanu. Choncho, musataye mtima.

Kodi pali njira yopewera mavuto amenewa?

Matenda a neurocutaneous syndromes amenewa sangapewedwe chifukwa amayamba chifukwa cha kusintha kwa majini. Komabe, mayeso a majini ndi upangiri wodziwa ngati muli ndi pakati angakuthandizeni kumvetsetsa ngati muli pachiwopsezo chopatsira mwana wanu vuto la majini.

Ndingadziwe bwanji ngati ndili pachiwopsezo chotenga matendawa?

Ngati wina m'banja mwanu ali ndi matenda a neurocutaneous syndrome, inu (kapena mwana wanu) mungakhale pachiwopsezo chowonjezeka cha matenda amenewa. Chifukwa chake, ngati wina m'banja mwanu ali ndi matendawa, uzani dokotala wanu. Dokotala wanu angakulangizeni kuti muyesere majini kuti muwone ngati pali kusintha kwa majini, ngati pakufunika kutero.

Pomaliza, uthenga wopita nawo kunyumba

Matenda a Neurocutaneous syndrome ndi matenda omwe amakhudza ziwalo zanu zonse zomwe zimakhudza mitsempha, khungu, ndi ziwalo zina. Ndizachibadwa kukhala ndi mantha komanso nkhawa mukazindikira kuti muli ndi vutoli.

Chofunika ndikudziwa kuti simuli nokha. Kuzindikira mtundu wa matenda a neurocutaneous omwe muli nawo ndikupeza gulu lachipatala lomwe limadziwa bwino za chithandizo chake ndiyo njira yabwino kwambiri yotsimikizira kuti mukulandira chithandizo chabwino komanso chithandizo choyenera.

Ndikukhulupirira kuti izi zikuthandizani. Ngati muli ndi mafunso aliwonse, musazengereze kulankhula ndi dokotala wanu. Khalani ndi thanzi labwino!

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