Shin ka san da cutar ROHHAD? Shin ɗanka yana da waɗannan alamun?

Shin ƙaramin yaronka ya fara girma ba zato ba tsammani? Ko kuma ka lura cewa yana da wahalar numfashi yayin barci? Wani lokaci waɗannan na iya zama alamun wata cuta mai matuƙar wuya da ake kira ROHHAD Syndrome. Bari mu yi magana game da wannan dalla-dalla, domin yana da matuƙar muhimmanci a san abubuwa kamar haka.

Menene Ciwon ROHHAD?

A taƙaice dai, ciwon ROHHAD wani yanayi ne mai matuƙar wahala, wanda ke barazana ga rayuwa wanda ke shafar ƙananan yara. Yana shafar tsarin endocrine, tsarin jijiyoyi masu zaman kansu, da numfashi. Yara masu wannan yanayin na iya ƙara nauyi cikin ɗan gajeren lokaci . Haka kuma suna iya fuskantar canje-canje a yanayin numfashi, hali, da kuma yanayin motsin rai yayin barci, wani lokacin kuma yayin da suke farkawa.

Ciwon ROHHAD sabon yanayi ne na lafiya. An fara gano shi kuma an bayyana shi a shekarar 1965. Idan aka yi la'akari da shi, an samu rahotannin wannan yanayin ƙasa da 200 a duk duniya. Don haka za ku iya tunanin yadda yake da wuya. Masana kiwon lafiya har yanzu suna bincike kan wannan yanayin don nemo ainihin dalilin da kuma samun magani na dindindin. A halin yanzu, babu wani gwaji ko magani na musamman ga ciwon ROHHAD. Saboda haka, likitoci suna kula da kowane yaro daban-daban bisa ga alamunsa.

Mene ne alamun cutar ROHHAD?

Yara masu fama da cutar ROHHAD yawanci suna cikin koshin lafiya kuma suna girma yadda ya kamata kafin bayyanar alamun. Duk da cewa alamun na iya bayyana tun suna ɗan shekara 9, yawancin yara suna nuna alamun farko tsakanin shekaru 2 zuwa 4.

Sunan 'ROHHAD' ya samo asali ne daga haruffan farko na manyan alamomin wannan cuta guda huɗu. Bari mu dubi menene su:

• (RO) Kiba Mai Sauri: Wannan shine lokacin da sha'awar yaro ke ƙaruwa kwatsam, wanda ke haifar da ƙaruwar nauyi mai yawa na fam 20-30 (kilogram 9-13) cikin ɗan gajeren lokaci, yawanci tsakanin watanni uku zuwa goma sha biyu. Wannan sau da yawa shine alamar farko ta kiba. Ka yi tunani a kai, ba wai kawai ƙaruwar nauyi ba ne, canji ne mai sauri da ake iya gani.

• (H) Rashin Tsarin Hana Haihuwa: Hypothalamus wani ɓangare ne na kwakwalwarka wanda ke sarrafa glandar pituitary. Hakanan yana daidaita abubuwa da yawa kamar girman jiki, nauyi, sha'awar abinci, balaga, motsin rai, da hali. Don haka, idan akwai matsala a cikin aikinsa, yaron ya kamata ya yi amfani da shi.Alamomi kamar kiba, gajeriyar tsayi, farfadiya, jinkirin girma, ƙaruwa ko raguwar fitsari, da kuma farkon balaga ko jinkirin girma na iya faruwa. Bugu da ƙari, yanayi kamar hypothyroidism da ciwon suga suma na iya faruwa.

• (H) Rashin iska mai shiga jiki: Yara masu fama da cutar ROHHAD ba za su iya sarrafa numfashinsu yadda ya kamata ba. Wannan yana nufin cewa lokacin da matakin iskar oxygen a cikin jini ya ragu ko kuma matakin carbon dioxide ya ƙaru, jiki ba ya yin numfashi sosai ko da sauri don ya rama. Wannan yanayi ne mai matuƙar haɗari. Wani lokaci, yana iya faruwa ba zato ba tsammani, kamar bayan ƙaramin kamuwa da cutar numfashi, kamar mura, ko bayan maganin sa barci.

• (AD) Rashin Tsarin Jijiyoyin Jiki: Tsarin jijiyoyin jikinmu (ANS) yana sarrafa ayyukan yau da kullun waɗanda ba za mu iya sarrafawa ba, kamar numfashi, narkewar abinci, bugun zuciya, da zafin jiki. Don haka, yara masu rauni ga wannan tsarin jijiyoyin jiki na iya fuskantar alamu kamar bugun zuciya mai jinkirin da ba a saba gani ba (Bradycardia), ƙarancin zafin jiki, da raguwar fahimtar ciwo . Ka yi tunanin, jin ƙarancin zafi yana nufin cewa ko da a cikin haɗari mai tsanani, yaron ba zai san hakan ba.

Mene ne ke haifar da cutar ROHHAD?

A gaskiya ma, likitoci ba su gano wani dalili na ƙarshe da ya haifar da cutar ROHHAD ba. Duk da haka, akwai manyan ka'idoji guda uku da ake bincike a kansu a halin yanzu waɗanda za su iya bayyana hakan.

1. Ilimin Halittar Jiki: Masu bincike da yawa sun yi imanin cewa cutar ROHHAD tana faruwa ne sakamakon maye gurbi a cikin kwayoyin halitta . Duk da haka, ba a san ainihin kwayar halittar ba tukuna. Duk abin da ke cikin jikinmu kwayoyin halitta ne ke sarrafa shi, don haka duk wani canji a cikinta zai iya shafar ta.

2. Epigenetics: Wasu masu bincike sun yi imanin cewa kwayoyin halittar da ke sarrafa wasu ayyuka a jikinmu za a iya kunna su lokacin da ake buƙata kuma a kashe su lokacin da ba a buƙata ba. Wannan ana kiransa epigenetics. Wannan ra'ayin ya dogara ne akan wani bincike da aka gudanar akan tagwaye iri ɗaya. A ciki, wani yaro ya kamu da cutar ROHHAD, yayin da ɗayan bai kamu ba. Don haka, ana iya tunanin cewa ba wai kawai kwayoyin halitta ba, har ma da bambance-bambancen yadda waɗannan kwayoyin halitta ke aiki na iya shafar wannan.

3. Rigakafin Kai: Wasu bincike sun nuna cewa cutar ROHHAD ita ma cuta ce ta garkuwar jiki.Akwai alaƙa tsakanin cututtukan da ke da alaƙa da garkuwar jiki, inda garkuwar jiki ke kai hari ga ƙwayoyin halittarta. A wani bincike, an gano cewa yara biyu da ke fama da cutar ROHHAD suna da ƙwayoyin rigakafi da ake kira immunoglobulins a cikin ruwan cerebrospinal (CSF) , ruwan da ke kewaye da kwakwalwa da kashin baya. Ta amfani da wannan bayanin, masu binciken sun kammala da cewa akwai kumburi a cikin tsarin jijiyoyi na tsakiya (CNS) , kwakwalwa da kashin baya. Wannan yana nufin cewa garkuwar jiki tana kai hari ga kwakwalwa bisa kuskure.

Mene ne matsalolin da ke tattare da cutar ROHHAD?

Baya ga manyan alamomin da muka tattauna a baya, yara masu fama da cutar ROHHAD na iya fuskantar wasu matsaloli , wato, ƙarin matsalolin lafiya. Yana da mahimmanci a san waɗannan kuma:

• Matsalolin tunani da ɗabi'a: Waɗannan yaran na iya fuskantar yanayi kamar rashin natsuwa, tashin hankali, yawan aiki, gajiya akai-akai, damuwa, baƙin ciki, da nakasa ta hankali . Waɗannan na iya shafar rayuwar yau da kullun ta yaron da kuma ta iyali.

• Matsalolin tsarin jijiyoyi: Yara da ke fama da cutar ROHHAD na iya fuskantar yanayi kamar farfadiya, motsin ido mara kyau (nystagmus), rashin bacci, ko matsalolin ci gaba .

• Matsalolin narkewar abinci: Matsalolin narkewar abinci mafi yawa a tsakanin waɗannan yara sune Ciwon suga (Diabetes Mellitus), juriya ga insulin, rashin haƙurin glucose, da kuma cututtukan hanta masu kiba. Waɗannan yanayi ne da ka iya haifar da sakamako na dogon lokaci ga lafiya.

• Ciwon jijiyoyi: Tsakanin kashi 40% zuwa 56% na yara masu fama da cutar ROHHAD suna kamuwa da ciwon jijiyoyi. Misali ɗaya shine wani nau'in ciwon da ake kira ganglioneuroma . Yawancin waɗannan ciwon ba su da lahani , amma wani lokacin suna iya zama masu illa . Saboda haka, likitoci koyaushe suna neman wannan.

• Rushewar numfashin zuciya: Wannan ita ce matsala mafi haɗari. Ita ce dakatarwar numfashi kwatsam da kuma aikin zuciya. Wannan na iya zama barazana ga rayuwa.

Ta yaya ake gane cutar ROHHAD? (Ganewar asali)

A halin yanzu, ana kiran cutar ROHHAD da suna ROHHAD syndromeBabu wani gwaji guda ɗaya da zai iya tabbatar da ganewar cutar. Madadin haka, ƙungiyar kwararrun likitoci suna aiki tare don yin ganewar asali bisa ga haɗin alamomin yaron na musamman . Yana kama da mai bincike, yana tattara shaida kuma yana cimma matsaya.

Domin a gano cutar ROHHAD, dole ne yaro ya cika waɗannan sharuɗɗan:

• Dole ne a sami dukkan alamun farko na kiba mai yawa da kuma rashin iska mai kyau yayin barci.
• Dole ne a nuna alamun rashin aikin hypothalamic (misali, ƙaruwar nauyi cikin sauri, hypothyroidism, ko canje-canje a lokacin balaga - da wuri ko a makare).
• Yana da mahimmanci a tabbatar da cewa babu wani sauye-sauye (bambancin kwayar halitta) a cikin kwayar halittar 'PHOX2B'. Wannan yana da mahimmanci a bambanta shi da 'CCHS (Cutar Hana Bude Ido ta Tsakiya),' wata cuta da ke da wasu alamu kama da cutar ROHHAD (misali, raguwar numfashi yayin barci).
• Waɗannan alamun ba za su bayyana a farkon shekarun rayuwa ba. Yawanci suna farawa daga baya.

Saboda ciwon ROHHAD cuta ce da ba kasafai ake samunta ba, yara kan iya fuskantar matsala da farko. Saboda haka, idan kana da waɗannan alamomin, yana da matuƙar muhimmanci ka nemi shawara daga ƙwararrun likitoci.

Ta yaya ake magance ciwon ROHHAD? (Magani)

Maganin cutar ROHHAD ya bambanta daga yaro zuwa yaro, ya danganta da alamun cutar. Ba kowane yaro za a iya ba shi tsarin magani iri ɗaya ba, domin yanayin kowa ya bambanta. Duk da haka, abu ɗaya ya zama ruwan dare ga kowa. Idan yaro mai cutar ROHHAD ya nuna matsalar numfashi yayin barci, zai buƙaci amfani da injin da ake kira 'CPAP' ko 'BiPAP' don taimaka masa numfashi. Bayan lokaci, yana iya buƙatar amfani da 'ventilator' don tallafawa tsarin numfashi gaba ɗaya. Wannan hanya ce ta ceton rai.

A lokacin da ake kula da yara masu fama da cutar ROHHAD, ana buƙatar taimakon likitocin yara a fannoni daban-daban. Misali:

• Masana cututtukan huhu
• Masana ilimin jijiyoyi
• Likitocin Endocrinologists (likitoci waɗanda suka ƙware a cikin glandar endocrine (hormones))
• Likitocin kunne (Kwararru a fannin kunne, hanci, da makogwaro)
• Likitocin zuciya
• Kwararru a fannin barci
• Masu ba da abinci mai gina jiki
• Masana cututtukan daji
• Masana ilimin halayyar ɗan adam
• Likitocin tabin hankali

Ta hanyar haɗin kan dukkan waɗannan mutanen ne muke ƙoƙarin samar da mafi kyawun magani ga yaron.

Menene makomar yara masu fama da cutar ROHHAD? (Outlook)

A gaskiya ma, babu maganin cutar ROHHAD a halin yanzu. Babban burin magani shine a magance alamun da suka keɓance ga kowane yaro da kuma kula da rayuwar yaron gwargwadon iyawarsa.

Ciwon ROHHAD da Tsawon Rai

Saboda ciwon ROHHAD wani yanayi ne mai matuƙar wahalar samu, yana da wuya a kimanta tsawon rai daidai. Babu isassun bayanai a kai tukuna.

Duk da haka, babban abin da ke haifar da mutuwa daga wannan cuta shine wata matsala da ake kira bugun zuciya da numfashi, wanda shine dakatarwar aiki na zuciya da tsarin numfashi kwatsam .

Za a iya hana hakan? (Rigakafi)

A halin yanzu babu wata hanyar da aka sani ta hana cutar ROHHAD - aƙalla ba tukuna ba.

Ciwon ROHHAD wani yanayi ne da ba kasafai ake samunsa ba kuma sabo. Don haka bincike kan wannan yanayin har yanzu yana kan matakin farko. Idan ka yi tunani game da lafiyar ɗanka, kowace rana da ba ta da amsoshi za ta iya jin kamar har abada. Mun fahimci hakan. Don haka, ka tabbata ka nemi taimako daga likitanka. Zai iya ba ka shawara kan hanyoyin da ake buƙata don magance alamun ɗanka, da kuma hanyoyin samun bayanai game da wannan yanayin.

Muhimman abubuwan da ya kamata mu ɗauka daga wannan labarin (Saƙon Gida)

To, yanzu kun fahimci cutar ROHHAD da muka yi magana a kai. Ga wasu muhimman abubuwa da ya kamata ku tuna:

• Ciwon ROHHAD cuta ce mai matuƙar wahalar samu, amma mai tsanani.
• Manyan alamomin sune ƙaruwar nauyi kwatsam, wahalar numfashi, da kuma matsaloli tare da hormones da tsarin jijiyoyi na autonomic.
• Babu wani takamaiman dalili ko magani na dindindin game da wannan tukuna. Maganin ya dogara ne akan alamun da ke tasowa.
• Idan kana zargin cewa yaronka yana da waɗannan alamun, kada ka firgita, amma ka nemi shawara nan da nan daga likita mai ƙwarewa.
• Domin wannan cuta ce da ba kasafai ake samunta ba, tana iya ɗaukar ɗan lokaci kafin a sami cikakken ganewar asali. Amma kada a karaya.
• Yana da matuƙar muhimmanci a bi shawarar likitoci a kuma samar wa yaron da tallafin da ya dace.

Ka tuna, ba kai kaɗai ba ne. Yana da muhimmanci a nemi tallafi daga likitoci, iyali, da kuma, idan ya zama dole, ayyukan ba da shawara yayin da ake magance irin wannan yanayi.

` ROHHAD Syndrome, ROHHAD Syndrome, Cututtukan Yara, Kiba kwatsam, Wahalar Numfashi, Hypothalamus, Cututtuka Masu Rarrafe