Khawuthelekelele imisebenzi elula oyenzayo yonke imihla, efana nokuthatha ikomityi, ukukama iinwele zakho, okanye ukunyuka izinyuko, iya isiba nzima ngakumbi. Ngaba uziva ngathi amalungu akho ayaphela amandla, izihlunu zakho ziyathuthumela, okanye amazwi akho ayadideka xa uthetha? Ezi ziimpawu zokuqala zesifo esibi abantu abaninzi abangazinakiyo, kodwa zinokuba njalo. Namhlanje siza kuthetha ngesifo esinye esinjalo, esibizwa ngokuba yi-ALS, okanye i-Amyotrophic Lateral Sclerosis.
Ngamafutshane, yintoni i-ALS?
I-ALS sisifo esichaphazela inkqubo yethu yemithambo-luvo. Ngokuchanekileyo, sisifo esonakalisa iiseli zemithambo-luvo, okanye ii-neurons, kwingqondo yethu nakwintambo yomqolo. Ezi neurons sizibiza ngokuba zii-motor neurons. Umsebenzi wazo ophambili kukuthatha imiyalezo engqondweni yethu size siyithumele kwimisipha yethu. Zonke iintshukumo ezifana nokuthi "phakamisa isandla sakho", "beka umlenze wakho phambili", "vula umlomo wakho" zilawulwa yile miyalezo.
Cinga ngayo njengomgca wefowuni osuka ebuchotsheni bakho uye kwizihlunu zakho. Xa i-ALS ikhula, le migca yefowuni iyaphuka kancinci kancinci. Emva koko imiyalezo ethunyelwayo esuka ebuchotsheni ayifikeleli kwizihlunu ngokufanelekileyo. Imiyalezo iyaphazamiseka. Ekugqibeleni, unxibelelwano luyalahleka ngokupheleleyo. Ngenxa yoko, izihlunu azifumani umyalelo wokusebenza, ngoko ke ziyancipha kancinci kancinci kwaye ziphele. Kwizonyango, oku sikubiza ngokuba yi-atrophy .
Esi sifo sasisaziwa ngokuba sisifo sikaLou Gehrig. Kungenxa yokuba umdlali webhola ekhatywayo odumileyo ngeminyaka yoo-1920 noo-1930 wayenesifo esi. Akukabikho nyango lwaso. Kodwa ungakhathazeki, kuye kwenziwa unyango olunceda ukulawula esi sifo, ukunciphisa iimpawu, nokuphila ubomi obutofotofo.
Kukho iintlobo ezimbini eziphambili zesifo se-ALS.
Esi sifo sinokwahlulwa sibe ziintlobo ezimbini eziphambili kuxhomekeke kwindlela esenzeka ngayo.
| Uhlobo lwe-ALS | Ingcaciso elula |
|---|---|
| I-ALS engaqhelekanga | Olu lolona hlobo luxhaphakileyo. Malunga nama-90% ezigulane ze-ALS zinalo olu hlobo. Luvela ngequbuliso, ngaphandle kwesizathu esaziwayo. Oko kuthetha ukuba aludluliselwa kumalungu osapho. |
| I-ALS yoSapho | Oku kunqabile kakhulu. Kuphela malunga ne-10% yezigulana ezilolu hlobo. Oku kubangelwa lufuzo. Oku kuthetha ukuba esi sifo sinokufunyanwa kubazali ukuya ebantwaneni ngokusebenzisa iijini. |
Zeziphi iimpawu ekufuneka uziqaphele?
Iimpawu ze-ALS zinokwahluka kumntu nomntu kwaye esi sifo sinokuqala kwiindawo ezahlukeneyo zomzimba. Nangona kunjalo, kukho iimpawu ezithile eziqhelekileyo.
| Uphawu | Kwenzeka ntoni ngale nto? |
|---|---|
| Ubuthathaka bemisipha | Uziva ngathi uziva ngathi iingalo zakho, imilenze, nentamo yakho azinamsebenzi. Kuba nzima ukuphakamisa iintsimbi okanye ukuhamba. |
| Ukuqhaqhazela kwemisipha nokungcangcazela | Kuvakala ngathi izihlunu ezingalweni zakho, emilenzeni, emagxeni, naselulwimini ziyashukuma ngokungazikhetheli. |
| Ukuqina kwemisipha (Ukuqaqamba kwemisipha) | Izihlunu ziyaqina kwaye ziqine kangangokuba amalungu angakwazi ukugoba okanye ukwandisa. |
| Ubunzima bokuthetha | Amagama ayaxaka, kuba nzima ukuthetha ngokucacileyo, kwaye ilizwi liyatshintsha. |
| Ubunzima bokuginya (i-Dysphagia) | Ukutya neziselo zinokubambeka xa ziginya. Amathe anokuphuma emlonyeni. |
| Ukubonakaliswa kweemvakalelo okungalawulwayo | Ngequbuliso ndilila okanye ndihleka ngaphandle kwesizathu. |
| Ukudinwa | Ndiziva ndidiniwe kakhulu nangona ndisenza umsebenzi omncinci. |
Ezi mpawu zisenokuqala engalweni okanye emlenzeni omnye zize zisasazeke kwezinye iindawo zomzimba ngokuhamba kwexesha. Izinga lokuqhubela phambili kwesi sifo alifani kuye wonke umntu.
Kubaluleke kakhulu: Njengoko isifo siqhubeka, kunokubakho ubunzima bokuphefumla. Ukuba uziva ngathi unengxaki yokuphefumla, yingxamiseko leyo. Kufuneka uye kwiSebe lezeMpilo eziNgxamisekileyo (ETU) lesibhedlele ngoko nangoko.
Kutheni i-ALS ikhula? Zithini izinto ezibangela umngcipheko?
Enyanisweni, abaphandi abakafumani unobangela oqinisekileyo we-ALS, kodwa kukho izinto ezininzi ekucingelwa ukuba zinegalelo kuyo.
- I-Genetics: Uhlobo lwe-ALS oluvela kusapho esixoxe ngalo ngaphambili lubangelwa kukuguquka kwezakhi zofuzo. Kukwafunyaniswe ukuba ipesenti encinci yezigulane ze-ALS ezihlala zihleli zinokuba nefuthe kwizakhi zofuzo.
- Izinto ezibangela imeko-bume: Ukuchatshazelwa ziikhemikhali ezinobungozi ezifana nelothe kunye nemercury, iintsholongwane ezithile, okanye ukwenzakala okukhulu emzimbeni nako kucingelwa ukuba kunegalelo koku.
Izinto ezonyusa umngcipheko wokufumana esi sifo:
- Ubudala: Abantu abaphakathi kweminyaka engama-55 ukuya kwengama-75 ubudala basengozini enkulu.
- Isini: Phakathi kwabantu abangaphantsi kweminyaka engama-55 ubudala, amadoda anamathuba amancinci okufumana esi sifo kunabafazi.
- Inkonzo yasemkhosini: Olunye uphando lubonise ukuba abo basebenze emkhosini (ingakumbi phesheya) banomngcipheko omkhulu wokufumana i-ALS. Oku kusenokubangelwa kukuvezwa kwiikhemikhali ezinobuthi okanye ukuzibhokoxa kakhulu emzimbeni.
Ugqirha uxilonga njani esi sifo?
I-ALS ayisosifo esinokufunyaniswa ngovavanyo olunye. Zininzi ezinye izifo ezineempawu ezifanayo. Ngoko ke, ugqirha wakho unokwenza uthotho lweemvavanyo ukuze aqinisekise ukuba azikho ezinye izifo.
Ezi ziimvavanyo ezihlala zenziwa:
- Uvavanyo lwegazi nomchamo: Jonga ezinye iimeko zempilo emzimbeni.
- I-Electromyogram (EMG): Le nto ivavanya umsebenzi wombane wezihlunu.
- Uphononongo lokuHanjiswa kweMithambo: Lulinganisa isantya imiyalezo ehamba ngaso kwimithambo-luvo.
- Umzobo weMagnetic Resonance (MRI):I-MRI scan iyenziwa ukujonga nawuphi na umonakalo okanye iithumba ezikwingqondo nakwi-spinal cord.
Ziziphi iindlela zonyango ze-ALS?
Njengoko besitshilo ngaphambili, akukho nyango lwe-ALS okanye unyango lwesi sifo. Nangona kunjalo, kukho iindlela ezahlukeneyo zonyango ezinokucothisa ukuqhubela phambili kweempawu kwaye zincede izigulana ziphile kamnandi kwaye zizimele.
Ugqirha wakho kunye neqela lakho lezonyango banokucebisa unyango olufana nolu:
Amayeza
Kukho amayeza aliqela anokunceda ukucothisa ukuqhubela phambili kwesi sifo nokulawula ezinye zeempawu. `I-Riluzole` kunye ne-`I-Edaravone` zezinye zezona ziphambili. Ukongeza, kunikwa amayeza ahlukeneyo kwizinto ezinje ngokuqina kwemisipha, ukuvuza amathe, iintlungu, kunye nokudakumba.
Unyango kunye noHlaziyo
- Unyango Lomzimba: Inika imithambo kunye neengcebiso zokunceda ukugcina izihlunu ziqinile, ukuthintela ukuqina kwamalungu, kunye nokukunceda usebenze ngokuzimela ixesha elide kangangoko kunokwenzeka.
- Unyango Lomsebenzi: Lufundisa indlela yokusebenzisa izixhobo ezifana nezitulo ezinamavili kunye nezixhobo zokuhamba kunye nendlela yokwenza imisebenzi yemihla ngemihla ngokulula.
- Unyango lokuthetha: Uqeqesho lokugcina amandla okuthetha ixesha elide kangangoko kunokwenzeka, ukuginya ukutya ngokukhuselekileyo, nokusebenzisa ezinye iindlela zonxibelelwano ukuba kuyimfuneko.
Inkxaso yesondlo
Ubunzima bokuginya bunokubangela ukwehla kobunzima bomzimba. Ngoko ke, kubalulekile ukulandela icebiso lengcali yesondlo kwaye utye ukutya okulula ukuginya nokubonelela ngesondlo esifunekayo. Kwezinye iimeko, ityhubhu yokondla ingasetyenziselwa ukuhambisa ukutya ngqo esiswini ngempumlo okanye isisu.
Inkxaso yokuphefumla
Njengoko isifo siqhubeka, izihlunu zokuphefumla ziyabuthathaka. Ngelo xesha, izixhobo ezifana ne-'Noninvasive Ventilation (NIV)' ezikhupha umoya ngemaski egqunywe empumlweni nasemlonyeni, zinokufuneka. Kwinqanaba lokugqibela, uncedo lomatshini opompa umoya emiphungeni (mechanical ventilation) lunokufuneka.
Impilo yakho yengqondo nayo ibaluleke kakhulu.
Ukufunda ukuba unesifo esifana ne-ALS nokuphila naso kunokuba luxinzelelo olukhulu. Iimvakalelo ezifana nokukhungatheka, ukuphelelwa lithemba, umsindo, ukudakumba, kunye nokuxhalaba zinokubakho.
Kuqhelekile ukuva ezi mvakalelo. Ngoko ke, njengokuba ukhathalela impilo yakho yomzimba, kufuneka ukhathalele nempilo yakho yengqondo. Thetha nogqirha wakho, usapho, okanye umhlobo othembekileyo malunga nendlela oziva ngayo. Funa uncedo kumcebisi wezempilo yengqondo ukuba kuyimfuneko.
Umyalezo Wokuya Ekhaya
- I-ALS sisifo esonakalisa iiseli zemithambo-luvo engqondweni nasemgogodleni, nto leyo ebangela ukuba izihlunu zingalawuleki kakuhle.
- Iimpawu zisenokuqala kancinci (njengokuba ndindisholo esandleni) zize zisasazeke emzimbeni wonke ngokuhamba kwexesha.
- Nangona kungekho nyango lupheleleyo loku, kukho iindlela ezininzi zonyango ezinokucothisa ukuqhubela phambili kwesi sifo kwaye zenze ubomi bube mnandi ngakumbi.
- Ubunzima bokuphefumla buyinto engxamisekileyo . Ukuba oku kuyenzeka, yiya esibhedlele ngokukhawuleza.
- Impilo yakho yengqondo ibaluleke njengempilo yakho yomzimba. Thetha nogqirha wakho kunye nabantu obathandayo malunga nendlela oziva ngayo.
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