Kodi muli ndi vuto la khungu lanu, tsitsi lanu, kapena mano anu? Tiyeni tikambirane za Ectodermal Dysplasia!

Kodi munayamba mwaonapo kuti ana ena aang'ono ali ndi tsitsi lochepa kwambiri, kapena mano awo amabwera m'mawonekedwe achilendo, kapena sachita thukuta konse? Tikamaona zinthu ngati izi, timakhala ndi funso laling'ono, "Chifukwa chiyani izi zikuchitika?" Nthawi zina chifukwa cha izi chingakhale matenda osowa a majini otchedwa Ectodermal Dysplasia , omwe tikambirana lero. Musadandaule, tidzakambirana za izi mwatsatanetsatane.

Kotero, kodi Ectodermal Dysplasia ndi chiyani?

Mwachidule, iyi ndi matenda osowa kwambiri a majini . Ndi vuto lomwe limachitika chifukwa cha kusintha kwa majini athu. Limakhudza kwambiri tsitsi lanu, mano, misomali, ndi ma glands a thukuta . Nthawi zina lingakhudzenso maso anu, makutu, mabere, kapena dongosolo la mitsempha. Ziwalo zonsezi za thupi lathu zimapangidwa kuchokera ku maselo akunja otchedwa ectoderm pamene tikukula m'mimba tili mwana wosabadwa. Chifukwa chake vutoli limachitika pakakhala vuto ndi kukula kwa ectoderm iyi.

Imeneyi ndi vuto lobadwa nalo , kutanthauza kuti munthu amabadwa nalo. Komabe, si aliyense amene angazindikire nthawi yomweyo mwana akangobadwa. Nthawi zina, makolo amazindikira zizindikiro mkati mwa masiku ochepa mwana atangobadwa. Nthawi zina, zizindikiro sizingawonekere kwa zaka zambiri.

Kodi pali mitundu yosiyanasiyana ya vutoli?

Inde, ofufuza apeza mitundu yoposa 180 ya Ectodermal Dysplasia . Mtundu uliwonse uli ndi zizindikiro zake. Taganizirani ngati anthu a m'banja limodzi ndi osiyana. Mitundu iyi ndi yosiyana. Tiyeni tiwone zitsanzo zina, sichoncho?

• Hypohidrotic Ectodermal Dysplasia (HED): Iyi ndi mtundu wofala kwambiri. Anthuwa ali ndi tiziwalo ta thukuta tochepa. Chifukwa chake, satuluka thukuta kwambiri monga ena. Akhozanso kutaya tsitsi, mano ang'onoang'ono kapena osowa, komanso matenda akhungu a nthawi yayitali monga eczema .
• Matenda a Ectodermal Dysplasia Osatha Kuteteza Matenda (EDA-ID): Mtundu uwu umadziwika ndi mavuto akuluakulu a chitetezo chamthupi. Mwachitsanzo, ma antibodies amachepa ndipo matenda osatha amapezeka pafupipafupi.
• Matenda a Hay-Wells: Anthuwa akhoza kukhala ndi zizindikiro monga kutayika kwa tsitsi, matenda a khungu, misomali yosweka, kutayika kwa mano, zikope zomwe zimaoneka ngati zalumikizana, komanso milomo yosweka ndi/kapena mkamwa .
• Hidrotic Ectodermal Dysplasia (HED2) kapena Clouston syndrome: Izi zimakhudza kwambiri kukula kwa tsitsi, khungu, ndi misomali.
• Matenda a Witkop: Pa vutoli, misomali imakhala yofooka ndipo imasweka mosavuta. Mano amathanso kutayika.(hypodontia) Mano amatha kukhala ngati makona ndipo amakhala patali kwambiri.

Tsopano mukumvetsa kuti uwu si matenda amodzi, koma kuphatikiza kwa mavuto osiyanasiyana.

Kodi zizindikiro za Ectodermal Dysplasia ndi ziti?

Monga tanenera kale, mtundu uliwonse wa Ectodermal Dysplasia uli ndi zizindikiro zake zapadera. Komabe, nthawi zambiri, munthu amene ali ndi vutoli amakumana ndi chimodzi mwa zotsatirazi:

• Maso: Maso ouma, kuchepa kwa maso, mavuto a kutsogolo kwa diso, mwachitsanzo , kukokoloka kwa cornea mobwerezabwereza .
• Kukula kwa ana: Kukula kwa ana omwe ali ndi vutoli kumachepa poyerekeza ndi msinkhu wawo.
• Tsitsi: Kuchepetsa tsitsi, kusweka mosavuta, kapena kukula pang'onopang'ono. Nthawi zina tsitsi limakhala lochepa kwambiri.
• Ziwalo: Kusintha kwa mawonekedwe a zala kapena zala, zala zina zitha kusowa, kapena zala zitha kukhala zolumikizidwa pamodzi (zala kapena zala zokhala ndi ukonde) .
• Pakamwa: Kusweka kwa milomo ndi/kapena pakamwa , mavuto a mano. Mwachitsanzo, mano opindika, mano osowa, kapena mano opangidwa modabwitsa. Nthawi zina mano amatha kukhala ngati mphero.
• Misomali: Kutayika kwa misomali ya zala kapena zala, kukhuthala, kupyapyala, kapena kuphulika kwa misomali.
• Khungu: Khungu limayamba kutupa ndipo limauma.
• Ma glands a thukuta: Ali ndi ma glands ochepa a thukuta, kotero satulutsa thukuta kwambiri kuposa anthu ena. Izi zimatchedwa Hypohidrotic Ectodermal Dysplasia (HED) . Monga mukudziwa, thukuta ndi lomwe limaziziritsa matupi athu akamatentha. Choncho tikatulutsa thukuta pang'ono, kapena tikasatulutsa thukuta konse, matupi athu amatha kutentha kwambiri mofulumira.
• Njira zoberekera ndi mkodzo: Kulephera kutulutsa kwathunthu chikhodzodzo kumawonjezera chiopsezo cha matenda omwe amakhudza ziwalo zoberekera kapena mkodzo, monga hydronephrosis , micropenis , kapena machende osakhwima . N'zothekanso kubadwa wopanda impso imodzi kapena zonse ziwiri.

Chofunika ndichakuti si aliyense amene ali ndi zizindikiro zimenezi amene ali ndi Ectodermal Dysplasia . Ngati mukuganiza kuti muli ndi zizindikiro zimenezi, dokotala wanu angatsimikizire zimenezi poyesa majini .

N’chifukwa chiyani vutoli limachitika? Kodi zifukwa zake ndi ziti?

Chifukwa chachikulu cha Ectodermal Dysplasia ndiKusintha kwa majini. Izi zikutanthauza kuti pali kusintha kwa majini komwe kumasunga chidziwitso m'thupi lathu. Mtundu wa ectodermal dysplasia womwe umakhalapo umadalira majini omwe ali ndi kusinthaku, komanso kusinthako komweko.

Matendawa nthawi zambiri amapatsirana kuchokera ku mibadwomibadwo . Izi zikutanthauza kuti ngati wina m'banjamo ali nawo, pali mwayi woti mibadwo yamtsogolo idzawatenganso. Komabe, nthawi zambiri, amatha kukula ngati kusintha kwa majini, ngakhale palibe aliyense m'banjamo amene wakhalapo ndi vutoli kale.

Kodi mumazindikira bwanji izi?

Mukauza dokotala kuti inu kapena mwana wanu ali ndi zizindikiro izi, choyamba adzakuyesani kaye . Makamaka, adzafufuza matenda m'tsitsi lanu, misomali, mano, ndi ma thickens a thukuta.

Kutengera ndi zizindikiro zanu, mutha kuyesedwanso zithunzi monga X-ray kapena CT scans .

Ngati dokotala wanu akukayikira kuti muli ndi Ectodermal Dysplasia , mwina adzalamula kuti muyesedwe majini . Mayesowa amatha kuzindikira kusintha kwa majini anu. Angakuuzeninso ngati muli ndi Ectodermal Dysplasia ndipo, ngati ndi choncho, mtundu wanji.

Kodi mankhwala ake ndi otani?

Chithandizo cha izi chimadalira mtundu wa Ectodermal Dysplasia yomwe muli nayo komanso momwe zizindikiro zanu zilili zoopsa. Palibe mankhwala a vutoli. Komabe, pali mankhwala omwe angakuthandizeni kuthana ndi zizindikiro zanu ndikukhala moyo wabwinobwino.

Mankhwalawa makamaka amathetsa zizindikiro zomwe zimachitika:

• Kusunga thupi lanu lozizira: Ngati simukutuluka thukuta mokwanira, zimakhala zovuta kuziziritsa thupi lanu. Choncho kuti mupewe kutentha kwambiri komanso kutopa ndi kutentha , imwani madzi ambiri . Muthanso kugwiritsa ntchito ma vesti ozizira .
• Opaleshoni ya mano ndi ya mkamwa: Ma implants a mano , milatho, kapena mano opangidwa ndi mano angagwiritsidwe ntchito m'malo mwa mano omwe akusowa. Ma bonding a mano , veneers, kapena korona angagwiritsidwenso ntchito kukonza mano ang'onoang'ono, osaoneka bwino.
• Chithandizo cha kutayika kwa tsitsi: Pali mankhwala monga Minoxidil (Rogaine®) olimbikitsa kukula kwa tsitsi.
• Chodzoladzola pakhungu: Ndikofunikira kwambiri kugwiritsa ntchito mafuta odzola, mafuta odzola, ndi mafuta odzola nthawi zonse kuti khungu lisamaume komanso lisamasuke .

Kusokonezeka kwa EctodermalPopeza zimakhudza ziwalo zosiyanasiyana za thupi, gulu lanu lachipatala lingakhale ndi akatswiri osiyanasiyana, monga madokotala a mano, madokotala a khungu, ndi akatswiri a majini.

Makanda obadwa ndi matenda aakulu ayenera kuyamba kulandira chithandizo chapadera mwamsanga. Dokotala wanu adzakuuzani zomwe mungayembekezere kutengera momwe zinthu zilili.

Kodi kukhala ndi vutoli kumakhala bwanji? (Outlook)

Ngati vutoli lapezeka msanga ndikuchiritsidwa bwino, nthawi zambiri zimakhala zotheka kukhala ndi moyo wabwino . Anthu ambiri omwe ali ndi Ectodermal Dysplasia amakhala ndi moyo wabwinobwino.

Monga tanenera kale, izi sizingachiritsidwe kwathunthu. Koma ndi chithandizo, zizindikiro zimatha kuchepetsedwa bwino . Choncho palibe choopa.

Zinthu zofunika kudziwa ngati mwana wanu ali ndi vutoli

Kutengera ndi zizindikiro ndi matenda a mwana wanu, angafunike chithandizo chosiyanasiyana. Dongosolo ndi nthawi ya chithandizochi zidzadalira mtundu wa Ectodermal Dysplasia yomwe mwana wanu ali nayo komanso kuopsa kwa zizindikiro zake. Dokotala wanu adzagwira nanu ntchito kuti apange dongosolo la chithandizo lomwe lingakhale labwino kwa mwana wanu.

Pa nthawi ngati iyi, n'zachibadwa kuti inu monga makolo mukhale ndi mafunso ambiri. Kambiranani mafunso onsewa ndi dokotala ndipo muwathetse.

Kodi izi zingapewedwe?

Mwatsoka, vutoli silingathe kupewedwa. Limayamba chifukwa cha kusintha kwa majini komwe sitingathe kuwongolera. Ngati inu kapena mwana wanu muli ndi Ectodermal Dysplasia , si chifukwa cha chilichonse chomwe mudachita kapena chomwe simunachite. Musadandaule nazo.

Ngati muli ndi vutoli ndipo mukukonzekera kuyambitsa banja, ganizirani zopeza uphungu wa majini . Mlangizi wa majini angakuthandizeni kumvetsetsa mwayi wanu wokhala ndi mwana wokhala ndi vuto la majini.

Kodi muyenera kupita kwa dokotala liti?

Ngati inu kapena mwana wanu muli ndi zizindikiro zilizonse zomwe mukuganiza kuti zikugwirizana ndi Ectodermal Dysplasia , lankhulani ndi dokotala wanu. Mwachitsanzo:

• Kuwola kwa dzino kapena kutayika kwa dzino
• Zala zokhala ndi ukonde
• Kuuma kapena kutupa pakhungu pafupipafupi
• Zolakwika m'maso kapena m'makutu

Ngati mukuona zinthu ngati izi, pitani kwa dokotala nthawi yomweyo.

Ndi mafunso ati omwe muyenera kufunsa dokotala wanu?

Ngati inu kapena mwana wanu mwapezeka ndi Ectodermal Dysplasia , mungafune kufunsa dokotala wanu mafunso monga:

• Kodi ine/mwana wanga muli ndi mtundu wanji wa ectodermal dysplasia?
• Kodi ndi njira ziti zochiritsira zomwe ndili nazo?
• Kodi vutoli lidzakhudza bwanji moyo wanga/wa mwana wanga?
• Ndi mavuto ati omwe ndiyenera kusamala nawo?
• Kodi ndiyenera kupita kwa dokotala kangati?
• Kodi pali magulu othandizira omwe amathandiza anthu omwe ali ndi mavuto awa?

Kupeza kuti inu kapena mwana wanu ali ndi Ectodermal Dysplasia kungakhale kovuta pang'ono. Padzakhala mayeso ndi madokotala ambiri oti muwone. Koma mukapeza matenda , mudzathandizidwa kumvetsetsa momwe zizindikiro zanu zimagwirizanirana, momwe mungawathanitsire, komanso zomwe mungayembekezere mtsogolo.

Musadandaule, ndi chithandizo choyenera, mutha kuthana ndi ectodermal dysplasia . Zingatenge nthawi ndi kuleza mtima kuti mupeze chomwe chikukuyenderani bwino. Kumbukirani, simuli nokha. Kulankhula ndi ena omwe akukumana ndi vuto lomweli kungakhale gwero lalikulu la mphamvu. Funsani dokotala wanu za magulu othandizira ndi zinthu zina.

Uthenga Wopita Nawo Kunyumba

Chabwino, tiyeni tiwonenso mfundo zofunika kwambiri zomwe takambirana lero zokhudza Ectodermal Dysplasia .

• Imeneyi ndi matenda osowa kwambiri omwe amapezeka m'majini .
• Zimakhudza kwambiri tsitsi, mano, misomali, ndi ma glands a thukuta .
• Pali mitundu yoposa 180, kotero zizindikiro zake zimasiyana .
• Kuyesa majini ndiyo njira yokhayo yodziwira matendawa molondola.
• Ngakhale kuti palibe mankhwala athunthu, pali mankhwala oletsa zizindikiro .
• Ngati atapezeka msanga ndi kuchiritsidwa bwino, anthu ambiri akhoza kukhala ndi moyo wabwinobwino .
• Simuli nokha, mutha kupeza thandizo kuchokera ku magulu othandizira .

Choncho, ngati inu kapena munthu amene mumamudziwa ali ndi zizindikiro izi, musaope kupita kwa dokotala kuti akalandire uphungu. Kudziwa bwino matendawa ndi gawo loyamba.

Ectodermal dysplasia, matenda a majini, matenda a pakhungu, mavuto a mano, mavuto a tsitsi, ma thyroid thukuta, thanzi la ana