Bari mu san game da cutar Krabbe, wata cuta mai saurin yaduwa a cikin yara

Yana da wuya a faɗi baƙin ciki da damuwar da uwa ko uba ke ji idan ƙaramin yaronsu ya yi rashin lafiya, ko ba haka ba? Musamman idan yanayi ne mai wuya kuma mai rikitarwa, nauyin ya fi girma. A yau za mu yi magana game da wata irin wannan yanayi mai wuya amma mai mahimmanci. Wannan ana kiransa da cutar Krabbe. Wasu mutane kuma suna kiransa da cutar Globoid Cell Leukodystrophy. Ko da yake sunan yana iya zama ɗan tsayi, bari mu sauƙaƙa shi.

Menene Cutar Krabbe?

A taƙaice dai, cutar Krabbe cuta ce ta kwayoyin halitta da ba kasafai ake samunta ba wacce ke shafar tsarin jijiyoyi. Ana furta ta da "kra-bah."

Wannan cuta tana cikin ƙungiyar cututtuka da ake kira Leukodystrophies. A cikin waɗannan cututtuka , murfin kariya da ake kira Myelin a cikin tsarin jijiyoyinmu ya ɓace (wannan ana kiransa Demyelination). Ka yi tunanin ƙwayoyin jijiyoyi a jikinmu a matsayin wayoyi na lantarki. Akwai murfin kariya a kusa da waɗannan wayoyi, kamar murfin filastik a saman wayar. Wannan shine abin da ake kira Myelin. Wannan murfin myelin shine abin da ke ba da damar saƙonnin jijiyoyi su yi tafiya da sauri da daidai. A cikin cutar Krabbe, wannan murfin myelin ya lalace.

Haka kuma, a cikin wannan cuta, ana iya ganin wani nau'in ƙwayar halitta mara kyau a cikin kwakwalwa da ake kira ƙwayoyin globoid. Waɗannan manyan ƙwayoyin halitta ne waɗanda galibi suna da fiye da ƙwayar halitta ɗaya.

Yayin da murfin myelin ya lalace, ƙwayoyin kwakwalwa suna fara mutuwa. Wannan a hankali yana haifar da matsaloli waɗanda ke lalata aikin tsarin jijiyoyi. Misali:

• Nakasa ta Hankali
• Inna
• Rashin ji ko kurma

Cutar Krabbe cuta ce mai lalacewa wadda take ƙara ta'azzara a hankali akan lokaci. Abin baƙin ciki shine, sau da yawa tana ƙarewa da mutuwa.

An sanya wa cutar suna ne bayan Knud Krabbe, wani likitan kwakwalwa dan kasar Denmark.

Wanene cutar Krabbe ta fi shafa?

Kimanin kashi 90% na mutanen da ke fama da cutar Krabbe suna fara samun alamun cutar tsakanin watanni 1 zuwa 7. Wannan ana kiransa da cutar Krabbe ta jarirai. Wani lokaci, cutar na iya farawa bayan watanni 18, a lokacin samartaka ko girma. Wannan ana kiransa da cutar Krabbe ta hanyar da ba ta fara ba.

Abu mafi mahimmanci shine cutar Krabbe cuta ce da ake gado daga iyaye zuwa ga yara ta hanyar kwayoyin halitta.

Yaya wannan cuta ta yaɗu?

Cutar Krabbe gabaɗaya cuta ce da ba kasafai ake samunta ba. Duk da haka, yawan kamuwa da ita ya bambanta a sassa daban-daban na duniya. A cewar masu bincike, cutar na iya faruwa a cikin kimanin haihuwa ɗaya cikin 100,000 da aka haifa a Turai da kuma haihuwa ɗaya cikin 250,000 da aka haifa a Amurka.

Duk da haka, cutar ta fi kamari a wasu al'ummomi da ke keɓe a Isra'ila, inda ake samun kusan mutum 6 cikin mutane 1,000.

Mene ne alamun cutar Krabbe?

Tsananin alamun cutar Krabbe ya dogara ne da shekarun da alamun suka fara. Ciwon Krabbe na jarirai yana ta'azzara da sauri kuma yawanci yana kashe mutane kafin su kai shekara 2. Nau'in cutar Krabbe da ya fara a ƙarshen lokaci ya fi sauƙi, kuma tsawon rayuwarta ya fi tsayi.

Alamomin cutar Krabbe Jariri

Ana iya gano alamun cutar Krabbe a lokacin jarirai a matakai uku masu muhimmanci:

Mataki na 1:

Jariri mai cutar Krabbe yawanci yana girma kuma yana girma sosai har sai ya kai watanni 4 zuwa 6. A lokacin ne alamun suka fara bayyana. Waɗannan sun haɗa da:

• Rashin natsuwa akai-akai, rashin haushi
• Amai
• Wahalar shan madara
• Rashin Ci Gaba
• Zazzaɓi akai-akai ba tare da wata alama ta kamuwa da cuta ba
• Raunin tsoka

Jariri mai fama da cutar Krabbe na iya zama mai saurin jin zafi ga taɓawa, sauti, da haske. Idan irin wannan motsin rai ya zo, jiki zai iya jin tauri (Tonic Spasms). Ka yi tunanin, jariri zai firgita ya kuma tauri idan aka yi masa ƙara kaɗan.

Mataki na 2:

A mataki na biyu, za ka iya ganin alamu kamar:

• Canje-canjen gani
• Atrophy na gani - Wannan yana nufin raunin jijiyar gani.
• Yanayin da Ba a Daidaita Ba - Matsewar tsokoki na wuya, gangar jiki, da ƙafafu na iya haifar da tsayawar da ke lanƙwasa baya daga wuya zuwa diddige (Opisthotonic Posturing). Yana kama da lanƙwasa baya kamar baka.
• Yanayi masu kama da kama
• Rage ci gaban tunani da jiki
• Rashin iya yin abubuwan da aka koya a baya (misali, murmushi, riƙe kanka sama) sake.

Mataki na 3:

A mataki na uku, ana ganin waɗannan alamun:

• Rashin gani gaba ɗaya (makanta)
• Rashin ji gaba ɗaya (kurmanci)
• Tsarin jiki mara kyau - yanayin da hannaye da ƙafafu suke a miƙe, yatsun hannuwa suna nuna ƙasa, kuma kai da wuya suna ja baya (rage girman jiki)
• Rage ƙarfin motsi.

Karanta waɗannan bayanai na iya sa ka ji baƙin ciki da tsoro. Amma sanin waɗannan abubuwa yana da matuƙar muhimmanci don gano cutar da wuri da kuma samun taimakon da kake buƙata.

Alamomin Cutar Krabbe da ta Fara Da Wuri

Cutar Krabbe ta jarirai ta ƙarshen haihuwa tana farawa ne tsakanin watanni 13 zuwa 36. Alamomin suna bayyana a hankali kamar haka:

• Fushi
• Canje-canjen gani
• Tafiya mara kyau
• Kamawa
• Shirye-shiryen Apneic
• Rashin daidaiton zafin jiki

A wannan yanayin, matsakaicin shekarun mace-mace yana kusa da shekaru shida.

Alamomin cutar Krabbe ta matasa sune:

• Canje-canjen gani
• Girgizawa
• Matsalolin tafiya
• Rashin iya sarrafa motsi kamar yadda ake so da kuma taurin tsoka a hankali
• Matsalar Rashin Hankali/Rashin Yawan Aiki (ADHD)

Yawan da wannan nau'in cutar Krabbe ke ta'azzara ya bambanta, amma yawanci mutuwa tana faruwa ne cikin shekaru 10 bayan an gano cutar.

Alamomin Cutar Krabbe da ta Fara Da Wuce Lokaci :

• Jin zafi a hannuwa da ƙafafu
• Canje-canje a cikin yanayi da hali
• Yin rawa yayin tafiya, rashin daidaito `(Ataxia)`
• Taurin tsoka (Spasticity)
• Canje-canjen gani da makanta
• Raguwa
• Rashin ji da kurma

Mutane da yawa da suka kamu da cutar Krabbe a lokacin girma suna samun rauni a hankali da kuma a jiki.

Me ke haifar da cutar Krabbe?

Cutar Krabbe cuta ce da iyaye ke yadawa ta hanyar kwayar halitta. Ana gadonta ne ta hanyar tsarin autosomal recessive. Wannan yana nufin cewa duka kwafin kwayar halittar da ke cikin kowace kwayar halittar yaron dole ne ta sami sauye-sauye. Mutumin da ke dauke da wannan cutar yana da kwafin kwayar halittar da aka canza a cikin kowanne daga cikin iyayensa. Duk da haka, iyayen ba sa nuna alamun cutar. Su ne kawai ke dauke da cutar.

Cutar Krabbe tana faruwa ne sakamakon maye gurbi a cikin kwayar halittar 'GALC'. Wannan yana haifar da rashin samar da wani enzyme da ake kira 'Galactoserebrosidase'. Wannan enzyme yana da mahimmanci ga jikinmu don ya samar da wani sinadari mai suna 'Galactocerebroside'. Wannan galactocerebroside muhimmin bangare ne na myelin (rufewar kariya a kusa da jijiyoyi).

Idan aka rasa wannan muhimmin enzyme, murfin myelin a cikin tsarin jijiyoyi na tsakiya yana lalacewa (demyelination). Wannan shine abin da ke haifar da alamun cututtukan jijiyoyi na Krabbe.

Ta yaya ake gano cutar Krabbe?

A wasu jihohi a Amurka, gwajin cutar Krabbe yana cikin tsarin tantance jarirai na yau da kullun. Wannan gwajin jini ne.

Wata hanya mai mahimmanci ta gano cutar Krabbe ita ce ta hanyar gwaje-gwajen hoto. Musamman ma, hoton MRI (Magnetic Resonance Imaging) zai iya gano canje-canje a cikin kwakwalwar yaro wanda ke nuna cutar Krabbe. MRI yana da matukar amfani wajen gano raunukan kwakwalwa a cikin cutar Krabbe. Waɗannan gwaje-gwajen kuma suna iya taimakawa wajen gano cutar a lokacin ƙuruciya da kuma lokacin girma.

Idan an gano cewa yaronka yana da cutar Krabbe, duba girman matsalar ji da gani.Za a buƙaci Gwajin Ji da Gwajin Ido. Wannan zai taimaka wajen tantance irin na'urorin taimakon ji da na taimakon gani da yaronka zai iya buƙata.

Idan an gano cewa ɗanka yana da cutar Krabbe, likitanka zai ba da shawarar ku da abokin tarayya ku yi gwajin kwayoyin halitta don tantance haɗarin da ke tattare da samun wani ɗa. Haka kuma za su iya ba da shawarar a gwada wasu 'yan uwa don ganin ko su ne ke ɗauke da kwayar halittar da ba ta dace ba.

Menene maganin cutar Krabbe?

Abin takaici, har yanzu babu maganin cutar Krabbe na dindindin. Kuma, yawanci yakan ƙare da mutuwa.

Duk da haka, akwai magani ɗaya da zai iya sarrafa ci gaban cutar Krabbe: dashen ƙwayoyin halitta masu tushe na hematopoietic (HSCT).

Dashen ƙwayoyin halitta yana maye gurbin ƙwayoyin halitta marasa lafiya a jiki da ƙwayoyin halitta masu lafiya. Kwayoyin halittar jini ƙwayoyin halitta ne marasa girma waɗanda za su iya girma zuwa dukkan nau'ikan ƙwayoyin jini, gami da fararen ƙwayoyin jini, jajayen ƙwayoyin jini, da kuma platelets.

A cikin HSCT, ana dasa ƙwayoyin jini daga mai bayarwa mai lafiya zuwa ga yaro mai cutar Krabbe. Wannan yana taimakawa wajen samar wa yaron ƙwayoyin halitta masu lafiya da kuma kyakkyawan aikin enzyme na GALC a cikin kwakwalwa. Duk da haka, HSCT ya fi tasiri idan aka ba shi kafin alamun su bayyana.

Masu bincike suna ci gaba da ƙoƙarin neman ingantattun magunguna don cutar Krabbe. Saboda babu magani a halin yanzu kuma cutar tana ƙara ta'azzara akan lokaci, babban maganin shine kulawa mai taimako . Wannan na iya haɗawa da:

• Magungunan shakatawa na tsoka don tashin hankali na tsoka
• Magungunan hana kumburi don magance ciwon mara
• Jiyya ta Jiki don Ƙara Motsi
• Maganin Sana'a ga Tsofaffi da Manya
• Idan akwai matsala wajen haɗiyewa, a yi amfani da bututun ciyarwa

Menene hasashen cutar Krabbe?

Hasashen cutar Krabbe ba shi da kyau. Yawanci yakan ƙare da mutuwa. Duk da haka, lokacin rayuwa ya bambanta dangane da shekarun da alamun suka fara.

Matsakaicin tsawon rayuwar yara masu fama da cutar Krabbe a lokacin jarirai shine kimanin watanni 13. Yawancin yaran da ke fama da cutar a lokacin da ta fara bayyana suna mutuwa cikin shekaru biyu bayan fara alamun cutar.

Yawan ci gaba da tsawon rayuwar cutar Krabbe, wadda ta fara tun daga ƙuruciya da kuma girma, ya bambanta.

Mutuwa daga cutar Krabbe yawanci tana faruwa ne saboda gazawar numfashi wanda raunin tsoka ko kamuwa da cuta ke haifarwa ta hanyar abinci/ruwa da ke shiga cikin huhu (buri).

Za a iya hana cutar Krabbe?

Domin cutar Krabbe cuta ce da aka gada, babu abin da za mu iya yi don hana ta.

Duk da haka, idan kuna damuwa game da haɗarin gadon cutar Krabbe ko wasu cututtukan kwayoyin halitta kafin ku yi ƙoƙarin samun ɗa, yi magana da mai ba da sabis na kiwon lafiya game da shawarwarin kwayoyin halitta.

Yaushe ya kamata ɗana da ke fama da cutar Krabbe ya ga likita?

Yaronka zai buƙaci ya riƙa zuwa wurin ƙungiyar kula da lafiyarsa akai-akai don lura da alamun cutar, ya riƙa lura da ci gaban da yake samu, da kuma daidaita tsarin kula da lafiyarsa idan ya cancanta. Idan yaronka ya kamu da wata sabuwar alama, ka sanar da likitanka nan da nan.

Cutar Krabbe cuta ce da ba kasafai ake samu ba, wacce aka gada daga cututtukan jijiyoyi. Sanin cewa ɗanka yana da cutar Krabbe na iya zama abin mamaki da kuma nauyi. Amma ka tuna, ba kai kaɗai ba ne. Akwai albarkatu don taimaka maka da ilmantar da iyalinka game da wannan. Samun ƙungiyar likitoci waɗanda suka san wannan cutar yana da mahimmanci don samar da mafi kyawun kulawa ga ɗanka.

Takaitawa (Saƙon Ɗauka Gida)

Ga wasu abubuwa masu sauƙi da za a tuna game da cutar Krabbe:

• Cutar Krabbe cuta ce ta kwayoyin halitta da ba kasafai ake samunta ba wacce ke lalata tsarin jijiyoyi.
• Wannan yana lalata murfin kariya da ake kira myelin wanda ke kewaye da ƙwayoyin jijiyoyi.
• Tsananin cutar da tsawon rayuwarta ya bambanta dangane da shekarun da alamun suka fara bayyana (jarirai, yara, manya). Ya fi tsanani a lokacin jarirai.
• A halin yanzu babu magani, amma akwai magunguna masu taimako don magance alamun cutar da kuma inganta rayuwar mutane. HSCT (dashen ƙwayoyin halitta na hematopoietic) kafin bayyanar alamun cutar na iya rage ta'azzarar cutar.
• Wannan cuta ce ta kwayoyin halitta kuma ba za a iya hana ta ba. Duk da haka, shawarwarin kwayoyin halitta na iya taimaka maka ka san haɗarin da ke tattare da ita.
• Idan yaronka yana da waɗannan alamun, yana da matuƙar muhimmanci ka nemi shawarar likita nan take.

Ina fatan wannan bayanin zai amfane ku. Ku tuna, ya fi kyau ku nemi shawarar likita game da kowace matsala ta lafiya.

Cutar Krabbe, Leukodystrophy na ƙwayoyin halitta na Globoid, Myelin, Demyelination, Cututtukan gado, Cututtukan jijiyoyi, Cututtukan yara