Ingabe wena noma ingane yakho nizizwa sengathi umbono wenu awucaci kahle ebusuku? Ingabe ngezinye izikhathi nihlangana nezinto ezingaphakathi endlini yenu lapho ukukhanya kuphansi kusihlwa? Noma nibona izimoto zivela nhlangothi zombili zisondela kini ngokuzumayo ngenkathi nihamba emgwaqweni? Kungenzeka ukuthi anizange nizinake kakhulu lezi zinto. Kodwa lezi kungaba izimpawu okufanele nikhathazeke ngazo kancane. Namuhla sizokhuluma ngesifo samehlo esibangela izimpawu ezinjalo, kodwa abantu abaningi ezweni lethu abangazazi kahle. Lokho yi-Retinitis Pigmentosa, noma (RP) ngamafuphi.
Kalula nje, iyini i-Retinitis Pigmentosa (RP)?
I-Retinitis Pigmentosa (RP) akuyona isifo esisodwa. Empeleni igama elijwayelekile leqembu lezifo zamehlo ezizuzwe njengefa, okungukuthi, ezizuzwe njengefa ngokwezakhi zofuzo. Kulesi simo, ingxenye ebucayi kakhulu yeso lakho, ngemuva, ibizwa ngokuthi i-retina.
Cabanga ukuthi iso lakho lifana nekhamera enhle. Ifilimu yale khamera ibizwa ngokuthi i-`(Retina)`. Lapho ukukhanya okuvela ngaphandle kungena esweni bese kushaya le `(Retina)`, okungukuthi, ifilimu, kudala izimpawu zikagesi bese kuya ebuchosheni. Ubuchopho buchaza lezo zimpawu njengesithombe futhi businika umuzwa 'wokubona'. Manje cabanga, kungakhathaliseki ukuthi ikhamera yakho inhle kangakanani, uma ifilimu ekuyo yonakele, ingabe isithombe osithathayo sizophuma sicacile? Ngeke siphume, akunjalo? Yilokho okwenzekayo ku-RP. Amaseli ku-`(Retina)` kancane kancane ayancipha futhi angasebenzi. Bese umbono wethu uyanyamalala kancane kancane.
Lesi yisimo esizalwa naso. Kodwa izimpawu zivame ukuqala ukuvela ebuntwaneni noma ebusheni. Okokuqala, ukubona ebusuku kuqala ukwehla. Bese kuthi, ukubona okungaphandle kuphele kancane kancane. Ngokuhamba kwesikhathi, lokhu kubona kuba kuncane kakhulu, futhi lapho abantu beneminyaka engu-40, abantu abaningi baba nokwehla okukhulu kokubona. Abanye bangase babe yizimpumputhe ngokomthetho. Kodwa ushintsho lubi kakhulu kangangokuthi kuthatha abanye abantu isikhathi ukuqaphela ukuthi lesi yisifo.
Lisho ukuthini leli gama?
Igama elithi "Retinitis Pigmentosa" empeleni liyadukisa kancane. Kwezokwelapha, uma igama liphela ngo-"-itis", lisho 'ukuvuvukala' noma 'ukuvuvukala'. Isibonelo, njengokuthi `(Appendicitis)`. Kodwa i-RP akuyona ukuvuvukala kwe-`(Retina)`. Okwenzekayo lapha ukuthi amaseli e-`(Retina)` ayancipha kancane kancane futhi aphele. Ngakho-ke, igama elifanele kakhulu lalokhu yi-`(Retinal Dystrophy).`
Ngakho-ke lisho ukuthini igama elithi "Pigmentosa"? Lihlobene nalesi simo. Lapho amaseli e-photoreceptor ku-retina yethu efa, akhipha umbala. Lo mbala uhlala ku-retina. Lapho udokotela ehlola iso, angabona la mabala ombala ahlala. Yingakho igama elithi "Pigmentosa" lenezelwa egameni.
Ziyini izimpawu ze-RP?
Njengoba sesixoxile ngaphambili, lezi zimpawu zibonakala kancane kakhulu. Zingase zikhule kancane kancane ngokuhamba kweminyaka. Ngakho kungaba nzima ukuzibona ezigabeni zokuqala.
Into ebaluleke kakhulu ukuthi uma wena noma ingane yakho ninalezi zimpawu, ningesabi futhi nibone udokotela wamehlo ukuze nithole iseluleko.
Ake sibone ukuthi ziyini lezi zimpawu. Ukuze siqonde kahle, ake sihlukanise lokhu kube izingxenye ezimbili.
| Uhlobo lwesibonakaliso | Incazelo elula |
|---|---|
| Izimpawu zokuqala (ngokuvamile eziqala ukubonakala) | |
| Ubunzima bokubona ekukhanyeni okuphansi (ubumpumputhe basebusuku) | Lesi yisibonakaliso sokuqala esifika engqondweni yabantu abaningi. Uma usuka endaweni ekhanyiswe kahle uya endaweni emnyama, isibonelo, ibhayisikobho, kuthatha isikhathi eside ukuthi amehlo akho ajwayele ubumnyama. Kuba nzima ukushayela ebusuku noma ukuhamba ebumnyameni. |
| Izindawo ezingaboni kahle ezinhlangothini zombili zombono | Ungakubona uma ubheka phambili, kodwa kuzwakala sengathi awukwazi ukubona ezinye izingxenye emaceleni. Lokhu kungase kungacaci kahle ekuqaleni. |
| Izimpawu zakamuva (njengoba isimo siba sibi kakhulu) | |
| Ukuncishiswa kwensimu yokubona (Umbono Womhubhe) | Kuzwakala sengathi ubheka umhlaba ngepayipi. Ungabona kuphela okuqondile phambili, hhayi okukunoma yiluphi uhlangothi. Lokhu kwenza kube nzima kakhulu ukuwela umgwaqo noma ukuhamba phakathi kwezixuku. Unamathuba amaningi okuba nezingozi ngoba awukwazi ukubona okuvela kunoma yiluphi uhlangothi. |
| Ubunzima bokusebenza eduze | Kuba nzima ukwenza imisebenzi elula njengokufunda izincwadi, ukubhala izincwadi, nokuthunga. |
| Ubunzima bokubona ubuso | Kunzima ukubona umuntu aze asondele. |
| Umehluko wokuqashelwa kombala | Eminye imibala, ikakhulukazi eluhlaza okwesibhakabhaka, ingase ingabonakali kangako. |
Kungani lesi simo senzeka?
Isizathu esiyinhloko salokhu ukushintshashintsha kwezakhi zofuzo . Kalula nje, izakhi zofuzo zethu ziqukethe isethi ephelele yemiyalelo yokuthi imizimba yethu yenziwe kanjani nokuthi isebenza kanjani. Lokhu kufana nohlaka olusetshenziswa ukwakha indlu. Uma kukhona ushintsho noma iphutha kulolu hlaka, okungukuthi, ezizakhi zofuzo, khona-ke lokho okwenziwe ngakho, okungukuthi, izingxenye zomzimba wethu, kungase kungakhuli noma kusebenze kahle.
Ososayensi bathole cishe izinguquko zezakhi zofuzo eziyi-100 ezinjalo ezingabangela i-RP. Ungazuza lesi sici sezakhi zofuzo kumama noma kuyihlo. Noma, ukuguquka kwezakhi zofuzo okusha kungenzeka emzimbeni wakho ngengozi, ngaphandle kokuba noma ubani emndenini wakho abe naso.
Ngenxa yokuthi kunezinhlobo eziningi zezakhi zofuzo, isakhi ngasinye silimaza i-retina ngendlela ehlukile. Yingakho i-RP ihlukahluka kumuntu nomuntu. Abanye abantu balahlekelwa umbono wabo ngokushesha kakhulu. Abanye balahlekelwa umbono wabo kancane kancane. Ngezinye izikhathi i-RP ingahambisana nezinye izimpawu eziningi futhi ingavela njengenye inkinga, njenge-Usher syndrome.
Kwenzekani ngempela ngaphakathi kweso?
Ake sijule kancane sibone ukuthi kwenzekani ngaphakathi kweso. Ku-"Retina" esikhulume ngayo ngaphambili, kunohlobo olukhethekile lweseli olubona ukukhanya. Sibiza lawa ngokuthi "ama-Photoreceptors". Lawa ngamaseli athatha ukukhanya okungena esweni, akuguqule kube isignali kagesi, bese ekuthumela ebuchosheni.
Kunezinhlobo ezimbili eziyinhloko zama-photoreceptors:
- Izinduku: Lezi yizo ezisinika umbono ebumnyameni, okungukuthi, ekukhanyeni okuphansi. Azikwazi ukuhlukanisa imibala, zisinika umbono omnyama nomhlophe kuphela. Kunezigidi zalezi `(Izinduku)` ku-`(i-Retina)` yethu, ikakhulukazi emaphethelweni e-`(i-Retina)`, okungukuthi, kuzo zombili izinhlangothi.
- Amakhoni: Yilokhu okusisiza sibone imibala nemininingwane emihle ngokucacile ekukhanyeni okuhle, okungukuthi, emini.
Ku-RP , izinduku zivame ukulimala kuqala . Yingakho izimpawu zokuqala ziwukuncipha kokubona ebusuku kanye nokulahlekelwa umbono ongaphandle. Ngokuhamba kwesikhathi, ama-cone nawo aqala ukulimala. Yilapho izinto ezifana nokubona imibala nokusebenza eduze zithinteka khona.
Udokotela usithola kanjani lesi sifo?
Uma unalezi zimpawu, kufanele ubonane nodokotela ohlinza amehlo (Ophthalmologist). Uzohlola amehlo akho. Ukuhlolwa kwamehlo okuvamile kungabona izimpawu zalesi simo.
Kunezinhlobo eziningana zokuhlolwa ezivame ukwenziwa ukuqinisekisa lesi sifo:
- Ukuhlolwa Kwensimu Ebonakalayo: Lokhu kulinganisa umbono wakho ongaphandle, okuwukuthi ungabona kude kangakanani emaceleni. Lokhu kungasiza ekunqumeni ukuthi unombono womhubhe yini.
- Isibani Esiqhekekile kanye ne-Fundoscopy: Kusetshenziswa ithuluzi elikhethekile ukuhlola ingaphakathi leso lakho (i-retina). Lokhu kungahlola ama-pigment deposits ahlobene ne-RP.
- Izithombe ze-Retinal: Izithombe ze-retina ezinezinga eliphezulu zithathwa ukuze kufundwe izinguquko kuyo.
- Ukuhlolwa kwe-ERG (i-Electroretinogram): Lokhu ukuhlolwa okukhethekile kancane. Okwenziwa lapha ukukala izimpawu zikagesi ezikhishwa yi-`(i-Retina)` yakho ukuze ubone ukuthi isabela kanjani ekukhanyeni. Ku-RP, lezi zimpawu zibuthakathaka kakhulu.
- Ukuhlolwa Kwezakhi Zofuzo: Lokhu kuhlolwa kungenziwa ngokuthatha isampula yegazi bese uthola ukuthi yisiphi isici sofuzo esibangela lesi sifo.
Yiziphi izindlela zokwelapha lokhu?
Lena yingxenye engingayithandi ukuyizwa. Ngeshwa, alikho ikhambi le-Retinitis Pigmentosa okwamanje. Kodwa, ungalilahli ithemba. Kunezindlela eziningi nezindlela zokusiza labo abaphila nalesi sifo nokwenza impilo ibe lula.
Udokotela wakho angakudlulisela ezinkonzweni zokuvuselela umbono. Lokhu kungafaka:
- Izinsiza zokubona - izibuko zokukhulisa, isofthiwe ekhethekile.
- Ukwelashwa Kwabasebenzi - Ukuqeqeshwa kokuthi ungenza kanjani imisebenzi yansuku zonke enokukhubazeka kokubona.
- Imfundo ekhethekile noma izinsizakalo zomsebenzi.
- Amaqembu okweluleka noma okusekela.
Okwamanje, ososayensi bayaqhubeka nokucwaninga izindlela zokwelapha lesi simo. Okwamanje kunezindlela eziningana zokwelapha ezivivinyweni ezibonise imiphumela ethembisayo:
- Ukwelashwa Ngezakhi Zofuzo: Leli yithemba elikhulu kunawo wonke. Okwenziwayo lapha ukuzama ukulungisa isakhi sofuzo esinephutha. Njengamanje, kunokwelashwa okukodwa okuvunyelwe kohlobo olulodwa lwezakhi zofuzo, `(RPE65).` Kodwa ucwaningo luyaqhubeka ngokushesha nakwezinye izakhi zofuzo.
- Izithasiselo zeVithamini A: Kwezinye izinhlobo ze-RP, ukuthatha umthamo ofanele weVithamini A kuye kwatholakala ukuthi kunciphisa ukuqhubeka kwesifo. Kodwa lokhu kubaluleke kakhulu: Ungalokothi uthathe iVithamini A ngaphandle kokubonisana nodokotela wakho. Abanye abantu bangase balimale ngokuthatha iVithamini A eningi kakhulu. Ngakho-ke lesi yisinqumo esingathathwa udokotela wakho kuphela.
- I-Retinal Prosthesis: Lena idivayisi kagesi efakwe ngaphakathi kweso. Inganikeza umbono othile. Kodwa-ke, imiphumela iyahlukahluka kumuntu nomuntu. Ungabuza udokotela wakho ukuthi lokhu kuyindlela enhle yini kuwe.
Umlayezo Wokuya Nawe Ekhaya
- I-Retinitis Pigmentosa (RP) iyiqembu lezifo zamehlo ezizuzwe njengefa (ngokwezakhi zofuzo) futhi ezingathelelani.
- Uphawu lokuqala noluvame kakhulu ukwehla kokubona ebusuku (ubumpumputhe basebusuku).
- Ngokuhamba kwesikhathi, ukubona kuzo zombili izinhlangothi kungase kunciphe, kudale isimo esizwakala sengathi sibheka ngepayipi (umbono womhubhe).
- Lesi sifo siyaqhubeka kakhulu, ngakho-ke kubalulekile ukubona udokotela wamehlo ngokushesha okukhulu uma unezimpawu.
- Akukho ikhambi lalokhu okwamanje. Kodwa-ke, kunezindlela eziningi zokunciphisa ijubane lokuqhubeka kwalesi sifo futhi kukusize uphile nokulahlekelwa umbono.
- Ungasebenzisi amavithamini noma izithasiselo ngaphandle kweseluleko sikadokotela.
- Uma wena noma ingane yakho nihlushwa yilesi simo, aniwedwa. Ngeseluleko sezokwelapha esifanele kanye nokusekelwa, ningaphila impilo ephumelelayo.
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