Njengomama noma ubaba, unaka kakhulu zonke izinguquko ezincane emzimbeni wengane yakho, akunjalo? Ngezinye izikhathi, into encane kakhulu esiyiqaphelayo ingaba uphawu lokuthile okukhulu. Namuhla sikhuluma ngesimo esisodwa esingavamile kakhulu, kodwa kubalulekile ukuthi wonke umuntu azi ngaso. Lesi sifo yi-Fibrodysplasia Ossificans Progressiva, noma i-FOP ngamafuphi.
Iyini ngempela i-FOP?
Kalula nje, lesi sifo sibangelwa yilapho izicubu ezithambile emzimbeni wethu, njengemisipha, imisipha, kanye nemisipha, ziphenduka kancane kancane zibe amathambo. Cabanga ngakho, imisipha yomzimba wethu ikhona ukuze iguquguquke futhi inyakaze. Amathambo ethu akhona ukuze ahlinzeke ngesakhiwo esiqinile kanye nohlaka. Imisebenzi yalezi zinhlelo ezimbili ihluke ngokuphelele.
Kodwa kulesi simo esingavamile esibizwa ngokuthi i-FOP, lolu hlelo oluhlelekile luyawohloka. Umzimba uqala ukuguqula izicubu ezithambile zibe yithambo ngokwawo. Kunjengokungathi uhlaka olusha lukhula ngaphakathi kithi, ngaphandle kohlaka lwethu oluvamile.
Njengoba amathambo amasha akheka ngale ndlela, ukunyakaza kwezingxenye ezahlukene zomzimba kancane kancane kuba nzima, ngezinye izikhathi kungenzeki nhlobo. Lokhu kwenza ngisho nemisebenzi yansuku zonke njengokukhuluma nokudla ukudla kube yinselele.
Lesi simo sivame ukuqala ebuntwaneni. Siqala entanyeni nasemahlombe bese sisakazekela kancane kancane emzimbeni ongezansi. Njengoba abantu bekhula, inani lamathambo athatha indawo yezicubu ezithambile liyanda. Kodwa-ke, izinga lokuthuthuka kwalokhu lingahluka kumuntu nomuntu.
Kungani lokhu kwenzeka? Iyini imbangela?
Imbangela eyinhloko isici esincane esakhiweni sofuzo esitshela umzimba wethu ukuthi kufanele sikhule kanjani amathambo nemisipha. Eqinisweni, ngisho nangesikhathi sokuthuthukiswa okunempilo, izicubu ezithile ezithambile ziphenduka ithambo. Kodwa ngenxa yalesi sici sofuzo, umzimba udala ithambo eliningi kunalelo olidingayo, uma ungalidingi.
Esikhathini esiningi, lokhu akuyona into ezuzwa ngabazali ezinganeni. Kodwa-ke, kungenzeka kaningi kakhulu. Ngokuvamile, kuba ushintsho olungahleliwe lwezakhi zofuzo (izinguquko ezintsha) olwenzeka ngesikhathi sokuphila.
Yiziphi izimpawu eziyinhloko zalesi sifo?
Kunezimpawu ezimbili eziyinhloko ezisiza ekutholeni lesi sifo. Kubaluleke kakhulu ukuzazi.
Uphawu lokuqala nolusobala kakhulu lubonakala ekuzalweni. Izinzwane ezinkulu kuzo zombili izinyawo zimfushane kunokuvamile futhi zibheke ngaphakathi, okungukuthi, ziye kwezinye izinzwane. Ezinganeni ezingaba ngu-50%, umehluko ofanayo ubonakala ezinzwaneni ezinkulu ezandleni. Lesi yisibonakaliso sokuqala esibaluleke kakhulu sokusola lesi sifo.
Uphawu lwesibili oluyinhloko izicubu ezithambile okukhulunywe ngazo ngaphambili ziphenduka ithambo. Lokhu kuvame ukuqala ngokubonakala kwezicubu ezibuhlungu, ezifana nesimila emhlane, entanyeni nasemahlombe. Lezi zigaxa zibizwa nangokuthi "ama-flare-ups." Lezi zigaxa ziphenduka ithambo ngokuhamba kwesikhathi. Lokhu kuqubuka kungenzeka ngokuphindaphindiwe kukho konke ukuphila.
| Uhlobo lwesibonakaliso | Incazelo |
|---|---|
| Uphawu lokuzalwa | Izinzwane ezinkulu kuzo zombili izinyawo zimfushane kunezivamile futhi ziphendukela kwezinye izinzwane. |
| Ukuqhuma kwama-flare | Kuvela amaqhubu abuhlungu emzimbeni (ngokuvamile entanyeni, emahlombe, emhlane). La maqhubu angahlala cishe amasonto ayi-6-8 bese ephenduka amathambo. |
Izimbangela zokuqubuka kwesifo
Kubalulekile ukuqaphela: Ukulimala okuncane, ukuwa, ukuhlinzwa, noma umjovo (ngisho nomjovo wokubulala izinzwa wokukhipha izinyo) kungaba yimbangela enkulu yalezi ziqhubu ezibuhlungu (ukuqubuka kwezinyo). Ngakho-ke, kufanele kuqashelwe kakhulu ngaphambi kokuthola noma yiluphi ukwelashwa komuntu onalesi simo. Ngisho nokutheleleka ngegciwane kungenza lesi simo sibe sibi kakhulu.
Ngesikhathi sokuqhuma okukhulu, izimpawu ezifana nobuhlungu, ukuvuvukala, ukuqina kwamalunga, ubuthakathaka, kanye nomkhuhlane ophansi zingase zivele eduze kwamaqhubu.
Yiziphi izinkinga ezingaba khona ngenxa yalesi simo?
Njengoba izicubu zomzimba ezithambile ziphenduka amathambo, ukuhamba kancane kuyancishiswa, okungaholela ezinkingeni ezahlukahlukene.
- Ubunzima bokuphefumula: Uma imisipha yesifuba iphenduka amathambo, amaphaphu awakwazi ukukhula ngokugcwele.
- Ubunzima bokudla: Uma ukunyakaza kwamalunga omhlathi kuvinjelwe, kuba nzima ukuvula umlomo nokudla. Lokhu kungaholela ekuntuleni ukudla okunempilo.
- Ukulahlekelwa yibhalansi yomzimba: Ubunzima bokugcina ibhalansi ngenkathi uhamba noma uhleli.
- Ubunzima bokukhuluma
- I-Scoliosis
- Ukutheleleka okuvamile: Ngenxa yokungakwazi ukunyakaza, kunengozi eyengeziwe yokutheleleka okuhlobene nekhala, umphimbo, namaphaphu.
- Ingozi yokuhlaselwa yinhliziyo: Kwezinye izimo, lokhu kungathinta nokusebenza kwenhliziyo.
Ungasithola kanjani lesi sifo?
Ngokuvamile, udokotela usola lesi sifo uma ebona lezi zimpawu ezimbili eziyinhloko ngesikhathi sokuhlolwa komzimba—umehluko ozwaneni olukhulu kanye namaqhubu emhlane nasemahlombe.
Ukuqinisekisa ukuthi lokhu kuyi-FOP, ukuhlolwa kwegazi okukhethekile (ukuhlolwa kofuzo) kungenziwa ukuze kutholakale isici sofuzo esibangela lesi sifo.
Kubaluleke kakhulu: I-FOP ivame ukuphambaniswa nomdlavuza noma ezinye izimo ezingavamile. Ngakho-ke, uma into efana ne-biopsy yenziwa ngokusola, ingaba yingozi kakhulu. Ngoba ukulimala kungaba yimbangela enkulu yokuthi lesi sifo sibe sibi kakhulu futhi kwakhiwe amathambo amasha. Ngakho-ke, uma ingane yakho inalezi zimpawu, kubalulekile ukutshela udokotela ngokusola kwakho i-FOP bese ubona udokotela onolwazi kule ndawo.
Ingabe ikhona indlela yokwelapha lokhu?
Ngeshwa, alikho ikhambi lalesi sifo okwamanje, futhi izinketho zokwelapha zilinganiselwe.
Udokotela wakho angase akunike imithi ethile, njenge-corticosteroids, ukulawula ubuhlungu nokuvuvukala okwenzeka ngesikhathi sokuqubuka kwamalunga.
Ngaphezu kwalokho, ukuze imisebenzi yansuku zonke ibe lula, ungathola amadivayisi okusiza njengezicathulo ezikhethekile kanye nama-braces ngosizo lochwepheshe wezokwelapha emsebenzini.
Umlayezo Wokuya Nawe Ekhaya
- I-FOP yisifo esingavamile kakhulu esibangelwa izakhi zofuzo lapho izicubu ezithambile, okuhlanganisa nemisipha, emzimbeni ziphenduka ithambo.
- Esinye sezibonakaliso zokuqala zalesi sifo ukuthi uzwane olukhulu lufushane futhi lubheke ngaphakathi lapho kuzalwa umntwana.
- Esinye isibonakaliso esiyinhloko esibonakala kamuva ukuqubuka okubuhlungu ebusweni bomzimba.
- Kubaluleke kakhulu: Ukulimala okuncane, ukuwa, imijovo, futhi ikakhulukazi ukuhlolwa kwe-biopsy kungasibhebhethekisa kakhulu lesi sifo.
- Uma usola ukuthi ingane yakho inalezi zimpawu, bona udokotela ngokushesha bese uveza izinsolo zakho nge-FOP.
- Nakuba kungekho ukwelashwa kwalesi sifo okwamanje, kunezindlela zokwelapha ezingasiza ekulawuleni izimpawu futhi zenze impilo ibe lula.
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