Mwana wako ari kurwara nekukamhina here? Ngatidzidzei nezveArthrogryposis Multiplex Congenita.

Hapana mashoko ekutsanangura mufaro watinonzwa patinotarisa mwana achangoberekwa, handiti? Asi dzimwe nguva, vacheche vedu vanogona kuva nematambudziko madiki ehutano. Nhasi tichataura nezvechirwere chisingawanzonzwikwi, asi chakakosha kuziva nezvacho. Chirwere ichi chinonzi arthrogryposis.

Chii chinonzi Arthrogryposis?

Zvichitaurwa zviri nyore, Arthrogryposis Multiplex Congenita (AMC) chirwere chinobata mwana anozvarwa aine majoini anopfuura rimwe asingakwanise kukotama kana kutwasanudza . 'Artho' zvinoreva majoini, uye 'gryposis' zvinoreva kukotama kana kukombama. Ichi hachisi chirwere chimwe chete, asi boka rezvirwere zvinopfuura mazana matatu . Semuenzaniso, chinogona kuonekwa nezvirwere zvetsandanyama zvakaita seMuscular Dystrophy uye zvirwere zvemajini zvakaita seTrisomy 18 - Edwards Syndrome.

Zvino, patinoti 'kuoma kwemajoini', vanachiremba vanoti izvi '(contracture)'. Kureva kuti, tsandanyama dzemwana, ganda, uye tsinga '(tendons)' zvinosimbiswa zvachose , saka majoini anopfupikiswa, uye haakwanise kukotama kana kutambanudza zvakanaka. Funga nezvazvo, majoini inzvimbo dzakadai semaoko edu, chiuno, mabvi, uye mitsipa. Majoini aya ndiwo anotibatsira kufamba. Saka, muvacheche vane arthrogryposis, majoini aya anonetseka kufamba zvakanaka. Anogona kunge akaomarara zvachose, kana kuti anogona kunge akakombama, kana kuti anogona kunge akatwasuka uye akabatirira panzvimbo imwe chete .

Ndezvipi zviratidzo zvakakosha zvinoratidzwa nemwana mumamiriro ezvinhu aya?

Vacheche vane arthrogryposis vane hunhu hwakasiyana pakuzvarwa kwavo. Zvisinei, hunhu uhwu hunogona kusiyana kubva pamwana mumwe kuenda kune mumwe, kunyangwe mumhuri imwe chete. Hunhu hwakajairika ndehwekuti:

• Mafudzi anodzikiswa uye muviri unotenderedzwa mukati.
• Uyo ane gokora rakatambanudzwa (rakaoma kukotama).
• Uyo ane maoko neminwe zvakakotama mukati uye zvakanamirwa.
• Mapfupa ehudyu anogona kunge atsemuka.
• Uyo akatambanudza mabvi.
• Tsoka dzakatenderedzwa pasi uye mukati (sekuti `(Clubfoot)`).
• Muzongoza unogona kukotama kudivi rimwe chete (kukombama kwemuzongoza).

Zviratidzo izvi hazvifanani kune wese munhu. Vamwe vanhu vanogona kunge vaine chimwe kana zviviri zvezviratidzo izvi, nepo vamwe vanogona kunge vaine zvakawanda. Zvakare, zvinogona kukanganisa majoini makuru pamwe nemajoini madiki . Izvi zvinoreva kuti zvinogona kukanganisa zvese kubva paminwe kusvika pamafudzi.

Kune mhando huru dze arthrogryposis here?

Ehe, tiri kutaura nezvemhando mbiri:

• (Amyoplasia) : Muizvi , majoini emakumbo ndiwo anonyanya kukanganiswa .
• (Distal Arthrogryposis) : Murudzi urwu , kuomarara kunoitika mumaoko netsoka (distal joints) , uye majoini makuru akadai semafudzi nechiuno haanyanyi kukanganiswa.

Dambudziko iri rakajairika zvakadii?

Arthrogryposis haisi chirwere chinowanzoitika . Kazhinji chirwere ichi hachiwanzoitiki.Dambudziko iri rine mukana wekuitika mumwana mumwe chete pavana 3,000 vanozvarwa vari vapenyu.

Izvi zvine chekuita nemajini here? Zvinobva kuzvizvarwa nezvizvarwa here?

Arthrogryposis chirwere chekuzvarwa nacho . Izvi zvinoreva kuti zviratidzo zvinotanga mwana asati aberekwa . Kazhinji , chikonzero chaicho hachizivikanwe . Zvisinei, zvinogona kunge zvichikonzerwa nechirwere chemajini . Nyanzvi dzakaona majini anopfuura mazana mana akachinja ane chekuita nearthrogryposis. Vakawanawo hukama nezvirwere zvemajini zvinopfuura makumi matatu nezvishanu .

Ndeupi musiyano uripo pakati pearthrogryposis ne isolated contracture yekuzvarwa nayo?

Mubvunzo wakanaka. `(Isolated Congenital Contracture)` zvinoreva kuti pane kuomarara kwemajoini muchikamu chimwe chete chemuviri . Semuenzaniso, wakamboona vamwe vana vachiberekwa netsoka imwe chete yakakotama mukati here? Izvozvo zvinonzi `(Clubfoot)`. Izvi zvinoreva `(isolated congenital contracture)`. Asi mu arthrogryposis, panogona kuva nekuomarara kwemajoini muzvikamu zviviri kana kupfuura zvemuviri .

Chii chinokonzera arthrogryposis (AMC)?

Kazhinji, chikonzero chaicho che arthrogryposis hachizivikanwe . Zvisinei, kune zvinhu zvakawanda zvinofungidzirwa kuti zvinokonzera chirwere ichi:

• Mwana ari mudumbu (mwana) haakwanise kufamba zvakanaka sezvaanokura mudumbu . Izvi zvinogona kukonzerwa nekusava nemvura yakakwana yeamniotic, kuva nemwana ari mudumbu (akadai semapatya), kana chimiro chisina kujairika chechibereko. Kana mwana ari mudumbu asingakwanise kufambisa majoini ake zvakanaka, mamwe matishu anoungana akakomberedza majoini iwayo, zvichiadzvanya .
• Zvimwe zvirwere zvine amai vane pamuviri . Semuenzaniso, chirwere chakaita sekuti `(Multiple Sclerosis)`. Kana mumwe munhu mumhuri mako aine `(Multiple Sclerosis)`, iwe unogona kunge uri panjodzi yakakura.
• Zvirwere zvemajini . Semuenzaniso, zvirwere zvakaita se "Muscular Dystrophy".
• Zvirwere zveCentral Nervous System . Izvi zvinosanganisira uropi nemusana. Mienzaniso inosanganisira zvirwere zvakaita se `(Moebius Syndrome)` uye `(Spina Bifida - Meningomyelocele)`.
• Zvirwere zveNeuromuscular System . Semuenzaniso, Myasthenia Gravis.
• Zvirwere zveConnective Tissue . Mienzaniso inosanganisira `(Dysplasia)` uye `(Metatropic Dwarfism)`.

Mune zvimwe zviitiko, zvinofungidzirwa kuti musanganiswa wezvinhu zvemajini uye zvakatipoteredza zvinogona kuita basa mukukonzera arthrogryposis.

Ndezvipi chaizvo zviratidzo zve arthrogryposis?

Zviratidzo zve arthrogryposis zvinogona kusiyana zvikuru kubva pamunhu kusvika pamunhu . Kunyangwe mumhuri imwe chete, zviratidzo zvemumwe munhu zvinogona kusiyana kana kurwadza kupfuura zvemumwe.

Zviratidzo zvepasi rose ndeizvi:

• Kukwanisa kufambisa majoini madiki nemakuru zvishoma.
• Pamwe majoini madiki nemakuru haagone kufambiswa zvachose.
• Kukura kwetsandanyama kwakadzikira (tsandanyama dzisina kusimba).
• Makumbo acho akapfava uye akaita sechubhu.
• Kamudzira kakaita seganda (kanyorova) kanoumbwa pamusoro pemajoini, zvichidzivirira kufamba kwemajoini.

Zvimwe zvinhu zvinoonekwa nevanhu vazhinji :

• Mapfupa marefu emaoko nemakumbo matete zvisina kujairika uye anotyoka nyore nyore.
• Cryptorchidism ndiko kutadza kwemachende (testes) kudzika mudumbu revakomana.

Zvinhu zvinoonekwa nevanhu vashoma chete :

• Mahudyu, magokora, kana mabvi akatyoka.
• Matambudziko nemaumbirwo ehurongwa hwetsinga huru (uropi hwako nemusana).
• Matambudziko nekushanda kwehurongwa hwetsinga huru (ndiko kuti, mashandiro ahwo).

Vanhu vane amyoplasia havawanzova nematambudziko nenhengo dzemukati kana mashandiro ekuziva . Zvisinei, vanenge 10% vanogona kusangana nematambudziko nedumbu. Mienzaniso:

• Gastroschisis: Izvi zvinoreva buri mudumbu.
• `(Intestinal Atresia)`: Izvi zvinoreva kuvharika kweura.

Majoini emakumbo ndiwo anonyanya kukanganiswa. Majoini emaoko ndiwo anotevera. Pamusoro pezvo, majoini aya anogonawo kukanganiswa kakawanda:

• Mapendekete
• Mabvi
• Gokora
• Gumbo
• Zvigunwe
• Ruoko
• Zvigunwe
• Hudyu
• Joini reshaya

Arthrogryposis (AMC) inogara kwenguva yakareba sei?

Arthrogryposis chirwere chisingarapiki zvachose . Zvisinei, kune mishonga inogona kuvandudza hupenyu hwako . Kurapa kwemuviri, kunyanya, kunogona kukubatsira nemabasa ezuva nezuva akadai sekupfeka nekunwa mvura.

Ungaziva sei kana uine arthrogryposis (AMC)?

Dzimwe nguva, chirwere ichi chinogona kuonekwa mwana asati aberekwa . Kana kuongororwa kweultrasound panguva yekuzvitakura kuchiratidza kusarongeka kwemakumbo emwana, zvinogona kufungidzirwa kuti ingave arthrogryposis. Vanachiremba vanowanzoona matambudziko aya emajoini mumwedzi mitatu yechipiri yekuzvitakura . Panguva iyoyo, chiremba anogona kukutumira kuti uwane mazano ezvemajini .

Mupi wezano wako wezvemajini achakupa ruzivo nezvezvirwere zvemajini zvinogona kukanganisa mwana wako. Vachakubvunza nezvenhoroondo yehutano hwemhuri yako uye vachakukurudzira chero bvunzo dzemajini dzinodiwa. Semuenzaniso:

• `(Kuenzanisa kweChorionic Villus - CVS)`
• `(Amniocentesis)`

Kunyangwe mushure mekunge mwana azvarwa, vanachiremba vanogona kuona chirwere ichi nekutarisa zviratidzo zvake uye kuita bvunzo dzakasiyana-siyana . Miedzo iyi inosanganisira:

• Zvidzidzo zveKufambisa Mitsipa: Zvinoyera kuti mafungu emagetsi anofamba nekukurumidza sei nemutsinga.
• Electromyography (EMG): Inonyora mashandiro emagetsi emhasuru.
• `(Kuongororwa kwetsandanyama)`: Kachidimbu kadiki ketsandanyama kanotorwa koongororwa.
• Kutevedzana kwemajini: Kuziva majini akachinja-chinja.
• Kuongororwa kweropa: Tarisa kusarongeka kwemajini nemakromosomu.
• `(Comparative Genomic Hybridization (CGH) array)`: Inoona shanduko muma chromosomes.
• Microarray: Inoongorora zviuru zvemajini panguva imwe chete.
• Zvidzidzo zveExome: Kuziva shanduko dzakasiyana-siyana mumajini.

Dzimwe nguva vanachiremba vanovimbawo nekuongororwa kwemifananidzo senge ultrasound neEMG.

Kana chiremba wako angoona chikonzero chingave chiri kukonzera arthrogryposis yako , achagadzira hurongwa hwekurapa . Unogona kubatsira kugadzira hurongwa ihwohwo.

Arthrogryposis (AMC) inorapwa sei?

Kunyange hazvo pasina mushonga chaiwo we arthrogryposis, kurapwa kunogona kuvandudza hupenyu hwemwana zvakanyanya .

Rangarirai kuti, ichi hachisi chirwere chinotadzisa mwana kurarama hupenyu hwakanaka. Nekurapwa kwakakodzera, zvinhu zvakawanda zvinogona kuitwa zvinobudirira.

Nekuti zvikonzero zve arthrogryposis zvakasiyana kune munhu wese, kurapwa kunosiyana kubva pamunhu kuenda kumunhu .

Mishonga inonyanya kushandiswa yekurapa arthrogryposis ndeiyi:

• Zvishandiso zvinoshandiswa kufambisa majoini akaomarara . Izvi zvinochinjwa zvishoma nezvishoma kuti joini rive nyore kuchinjika.
• Kurapa muviri : Izvi zvinovandudza kufamba kwemajoini uye zvinodzivirira kupera simba kwetsandanyama.
• Kugadzirisa Majoini : Izvi zvinosanganisira nyanzvi yekufambisa majoini zvinyoro nyoro.
• Maekisesaizi ekutambanudza : Izvi zvinowedzera kuchinjika uye mafambiro emapfupa.
• Kuvhiyiwa . Kuvhiyiwa kunogona kuitwa kuti pave nekufamba kwemajoini akadai segumbo, chiuno, ibvi, ruoko, kana gokora. Chinangwa chikuru pano ndechekuvandudza mashandiro emwana . Izvi zvinosanganisira kusunungura mapfupa kubva munyama inodzivirira kufamba, zvichiita kuti tsandanyama dzikwanise kukwenya nekufamba. Zvisinei, kuvhiyiwa kunoitwa muzviitiko zvishoma .

Nyanzvi dzinokurudzira nzira yekurapa ine hunyanzvi hwakawanda . Izvi zvinoreva kuti mwana wako angangoda kurapwa kunopfuura kumwe chete. Mhedzisiro yakanaka inowanikwa kana chikwata chevanachiremba nevarapi vakashanda pamwe chete.

Ndinofanira kuona nyanzvi here?

Ehe, zvechokwadi. Kune nyanzvi dzakawanda dzinogona kubatsira mwana wako ne arthrogryposis. Semuenzaniso:

• Chiremba wevana
• Chiremba wemapfupa (nyanzvi yemapfupa nemajoini)
• Chiremba ane hunyanzvi muzvirwere zvetsinga (Neurologist)
• Nyanzvi yezvemajini yezvekurapa
• Chiremba weKuporesa
• Chiremba weMiviri

Vanhu ava vese vanoshanda pamwe chete kugadzira hurongwa hwakanakisa hwekurapa mwana wenyu.

Pane mishonga inogona kuitwa kumba here?

Vanhu vazhinji vane arthrogryposis vanoda kurapwa kwemuviri muhudiki hwavo hwese . Varapi vemuviri vachakudzidzisa maekisesaizi aunogona kuita kumba . Zvakakosha zvikuru kuita izvi nemazvo.

Ko arthrogryposis (AMC) inogona kudzivirirwa here?

Izvi hazvigoneki kwauri . Hapana chawaigona kuita kuderedza njodzi yemwana wako yekubatwa nechirwere che arthrogryposis. Saka ndapota usazvipa mhosva .

Ramangwana remunhu ane arthrogryposis (AMC) rakaita sei?

Maonero enguva refu evanhu vane AMC anoenderana nezvinhu zvakati wandei:

• Kuomarara kwe arthrogryposis.
• Chikonzero chikuru che arthrogryposis.
• Maitirwo anoita muviri wako kana wemwana wako kana warapwa .

Asi mashoko akanaka ndeekuti ruzhinji rwevanhu vane arthrogryposis vanorarama sevanhu vakuru vakazvimiririra . Kurapwa kunogona kuvandudza kufamba kwavo zvekuti vanogona kurarama hupenyu hwakajairika, kungofanana nevanhu vasina arthrogryposis.

Ko arthrogryposis inowedzera kuipa nekufamba kwenguva here?

Arthrogryposis haisi chirwere chinoenderera mberi . Izvi zvinoreva kuti kuomarara kwemajoini hakunyanyi kuipa nekufamba kwenguva. Zvisinei, dambudziko riripo rinogona dzimwe nguva kuva rakakomba . Saka, kana vanachiremba vangosimbisa kuti mwana wako ane arthrogryposis, zvakanaka kuziva zvikonzero zvinogona kukonzera.

Mibvunzo ipi yandinofanira kubvunza chiremba nezve arthrogryposis?

Kubvunza chiremba wako mibvunzo kunogona kukubatsira kunzwisisa zviri nani arthrogryposis. Funga nezvekubvunza chiremba wako mibvunzo iyi nezvechirwere chemwana wako:

• Mwana wangu ane rudzii rwe arthrogryposis?
• Mwana wangu achafanira kupfeka plaster kwenguva yakareba sei?
• Ndeipi nzira yakanakisisa yekurapa mwana wangu?
• Ndivanaani vanachipangamazano vanofanira kushanyirwa nemwana wangu?
• Tinotanga rini physiotherapy?
• Pane mishonga here inofanira kutorwa nemwana wangu?
• Ndingabatsira sei mwana wangu zvakanyanya?

Vanhu vane arthrogryposis vanozvarwa vaine majoini akaomarara kana kuti asingafambi. Vanogona kunge vachiomerwa nemabasa ezuva nezuva, akadai sekufamba kana kubata kapu. Vanhu vazhinji vanoda kurapwa kwemuviri uye dzimwe nguva kuvhiyiwa kuti vawedzere hupenyu hwavo.

Chinhu chekupedzisira icho mubereki anoda kunzwa ndechekuti pane chimwe chinhu chisina kumira zvakanaka pamwana wake asati aberekwa kana achangoberekwa. Ndapota musazvipa mhosva . Hapana chawaigona kuita zvakasiyana. Kana uchida rubatsiro rwekugadzirisa mamiriro ezvinhu akaoma aya, taura nachiremba wako nezvemazano nemapoka ekutsigira. Hausi wega . Kune dzimwe mhuri dziri kusangana nemamiriro ezvinhu akafanana.

Chekupedzisira, yeuka izvi (Mharidzo Yekuenda Kumba)

Arthrogryposis chirwere chinotapukira mwana anozvarwa aine rimwe kana akawanda majoini akaomeswa nechando uye asingakwanise kufamba zvakanaka. Zvinganzwika sekutyisa, asi yeuka kuti nekurapwa kwakakodzera uye kutarisirwa nerudo, vana ava vanogona kurarama hupenyu hwakanaka kwazvo .

Kunyange hazvo chikonzero chaicho chisingawanikwe nguva dzose, majini nezvimwe zvirwere panguva yekuzvitakura zvinogona kuita basa racho . Zvakakosha kuziva chikonzero chacho nekukurumidza uye kutanga kurapwa kwakadai sekurapa nemuviri, kuisa chisimbiso kana zvichidikanwa, uye kuvhiyiwa kashoma.

Yeukai kuti ichi hachisi chinhu chinogona kudzivirirwa, saka sevabereki, musaora mwoyo . Shandai pamwe chete nechikwata chenyu chekurapa uye ipai mwana wenyu zvaanoda. Hamusi mega, kune vanhu vakawanda vanogona kubatsira.

Nemwoyo murefu, rudo, uye mazano akakodzera ekurapa , kunyangwe mwana ane arthrogryposis anogona kuva neramangwana rakanaka.

Arthrogryposis , kuomarara kwemajoini, mamiriro ekuzvarwa nawo, hutano hwemwana, zvirwere zvemajini, kurapwa kwemuviri, kuomarara kwemajoini akawanda