Njengomama okanye utata, unika ingqalelo kakhulu kutshintsho oluncinci emzimbeni womntwana wakho, akunjalo? Ngamanye amaxesha, into encinci esiyiqaphelayo ingaba luphawu lwento enkulu. Namhlanje sithetha ngesinye sezifo ezingaqhelekanga kakhulu, kodwa kubalulekile ukuba wonke umntu azi ngaso. Esi sifo yiFibrodysplasia Ossificans Progressiva, okanye i-FOP ngamafutshane.
Yintoni kanye kanye i-FOP?
Ngamafutshane, esi sifo sivela xa izicubu ezithambileyo emzimbeni wethu, ezifana nemisipha, imisipha, kunye nemisipha, zijika kancinci zibe ngamathambo. Cinga ngako, imisipha yomzimba wethu ikhona ukuze iguquguquke kwaye ishukume. Amathambo ethu akhona ukuze anike isakhiwo esomeleleyo kunye nesakhelo. Imisebenzi yezi nkqubo zimbini yahlukile ngokupheleleyo.
Kodwa kule meko ingaqhelekanga ebizwa ngokuba yi-FOP, le nkqubo icwangcisiweyo iyawohloka. Umzimba uqala ukuguqula izicubu ezithambileyo zibe yithambo ngokwawo. Kungathi kukho ulusu olutsha olukhula ngaphakathi kuthi, ngaphandle kolusu lwethu oluqhelekileyo.
Njengoko amathambo amatsha edalwa ngale ndlela, ukuhambahamba kwamalungu ahlukeneyo omzimba kancinci kancinci kuba nzima, ngamanye amaxesha akunakwenzeka kwaphela. Oku kwenza nemisebenzi yemihla ngemihla efana nokuthetha nokutya isidlo ibe ngumceli mngeni.
Le meko idla ngokuqala kwasebuntwaneni. Iqala entanyeni nasemagxeni ize isasazeke kancinci kancinci iye emzimbeni ongezantsi. Njengoko abantu bekhula, inani lamathambo athatha indawo yezicubu ezithambileyo liyanda. Nangona kunjalo, isantya oku kuqhubeka ngaso sinokuhluka kumntu nomntu.
Kutheni oku kusenzeka? Yintoni unobangela?
Eyona nto ibangela sisiphako esincinci kwi-gene esixelela umzimba wethu indlela yokukhulisa amathambo kunye nezihlunu. Enyanisweni, nangona ngexesha lokukhula okunempilo, ezinye izicwili ezithambileyo zijika zibe yithambo. Kodwa ngenxa yesi siphene se-genetic, umzimba udala amathambo amaninzi kunokuba uwadinga, xa ungawadingi.
Amaxesha amaninzi, oku akuyonto izuzwa ngabazali ukuya ebantwaneni. Nangona kunjalo, kunokwenzeka kancinane kakhulu. Amaxesha amaninzi, lutshintsho olungalindelekanga kwiijini (iinguqu ezintsha) ezenzeka ebomini.
Ziziphi iimpawu eziphambili zesi sifo?
Kukho iimpawu ezimbini eziphambili ezinceda ekuchongeni esi sifo. Kubaluleke kakhulu ukuba uzazi ezi mpawu.
Uphawu lokuqala nolucacileyo lubonakala ekuzalweni. Iinzwane ezinkulu ezinyaweni zombini zimfutshane kunesiqhelo kwaye zijike zijonge ngaphakathi, oko kukuthi, kwezinye iinzwane. Malunga nama-50% abantwana, umahluko ofanayo ubonakala kwiinzwane ezinkulu ezisezandleni. Olu luphawu olubalulekileyo lokuqala lokurhanela esi sifo.
Uphawu lwesibini oluphambili kukuba izicubu ezithambileyo ezikhankanyiweyo ngaphambili ziguquke zibe yithambo. Oku kudla ngokuqala ngokubonakala kwezilonda ezibuhlungu ezifana nethumba emqolo, entanyeni nasemagxeni. Ezi qhuma zikwabizwa ngokuba yi-"flare-ups." Ezi qhuma ziguquka zibe yithambo ngokuhamba kwexesha. Ezi qhuma zinokwenzeka ngokuphindaphindiweyo ebomini bonke.
| Uhlobo lophawu | Inkcazo |
|---|---|
| Uphawu lokuzalwa | Iinzwane ezinkulu ezinyaweni zombini zimfutshane kunesiqhelo kwaye zijike ziye kwezinye iinzwane. |
| Ukuqhuma kwee-flare-ups | Kuvela amaqhuma abuhlungu emzimbeni (ngokufuthi entanyeni, emagxeni, emqolo). La maqhuma anokuhlala malunga neeveki ezi-6-8 aze aguquke abe ngamathambo. |
Izizathu zokuqhambuka kwesifo
Kubalulekile ukuqaphela: Ukwenzakala okuncinci, ukuwa, utyando, okanye inaliti (nokuba yinaliti yokubulala iintlungu xa kukhutshwa izinyo) inokuba sisizathu esikhulu sezi ziqhuma zibuhlungu (ukudumba kwezinyo). Ngoko ke, umntu onesi sifo kufuneka alumke kakhulu ngaphambi kokuba afumane naluphi na unyango. Nokuba usulelo lwentsholongwane lunokwenza le meko ibe mandundu.
Ngexesha lokuqhuma, iimpawu ezinje ngentlungu, ukudumba, ukuqina kwamalungu, ukungonwabi, kunye nomkhuhlane ophantsi zinokwenzeka ngeenxa zonke zamaqhuqhuva.
Ziziphi iingxaki ezinokwenzeka ngenxa yale meko?
Njengoko izicubu zomzimba ezithambileyo ziguquka zibe ngamathambo, ukuhambahamba kunqongophele, nto leyo enokubangela iingxaki ezahlukeneyo.
- Ubunzima bokuphefumla: Ukuba izihlunu zesifuba zijika zibe ngamathambo, imiphunga ayinakukhula ngokupheleleyo.
- Ubunzima bokutya: Ukuba intshukumo yomhlathi ithintelwe, kuba nzima ukuvula umlomo nokutya. Oku kunokukhokelela ekusweleni kwesondlo.
- Ukulahlekelwa kukulinganisela komzimba: Ubunzima bokugcina ukulinganisela xa uhamba okanye uhleli.
- Ubunzima bokuthetha
- I-Scoliosis
- Usulelo oluqhelekileyo: Ngenxa yokungakwazi ukuhamba, kukho umngcipheko okhulayo wosulelo olunxulumene nempumlo, umphimbo, kunye nemiphunga.
- Umngcipheko wokuhlaselwa yintliziyo: Kwezinye iimeko, oku kunokuchaphazela nokusebenza kwentliziyo.
Indlela yokuxilonga esi sifo?
Ngokwesiqhelo, ugqirha urhanela esi sifo xa ebona ezi mpawu zimbini ziphambili ngexesha lovavanyo lomzimba—umahluko kubhontsi omkhulu kunye namaqhuma emqolo nasemagxeni.
Ukuqinisekisa ukuba le yi-FOP, uvavanyo lwegazi olukhethekileyo (uvavanyo lwemfuza) lunokwenziwa ukuze kuchongwe isiphene semfuza esibangela esi sifo.
Kubaluleke kakhulu: I-FOP idla ngokubhideka nomhlaza okanye ezinye iimeko ezingaqhelekanga. Ke ngoko, ukuba into efana ne-biopsy yenziwe ngokurhanelwa, inokuba yingozi kakhulu. Kuba ukwenzakala kunokuba ngunobangela omkhulu wokuba isifo sibe sibi kakhulu kwaye kuvele amathambo amatsha. Ke ngoko, ukuba umntwana wakho unezi mpawu, kubalulekile ukuxelela ugqirha malunga nokurhanelwa kwakho yi-FOP kwaye ubone ugqirha onolwazi kweli candelo.
Ngaba ikhona indlela yokunyanga oku?
Ngelishwa, akukho nyango lwale sifo okwangoku, kwaye iindlela zonyango zinqongophele.
Ugqirha wakho unokukunika amayeza athile, anjenge-corticosteroids, ukulawula iintlungu kunye nokudumba okwenzeka ngexesha lokuqhuma kwesikhumba.
Ukongeza, ukuze imisebenzi yemihla ngemihla ibe lula, unokufumana izixhobo zokuncedisa ezifana nezihlangu ezikhethekileyo kunye neebraces ngoncedo lwengcali yezonyango.
Umyalezo Wokuya Ekhaya
- I-FOP sisifo esingaqhelekanga kakhulu semfuza apho izicubu ezithambileyo, kuquka nezihlunu, emzimbeni ziguquka zibe ngamathambo.
- Enye yeempawu zokuqala zesi sifo kukuba ubhontsi omkhulu umfutshane kwaye ujonge ngaphakathi xa umntwana ezalwa.
- Olunye uphawu oluphambili oluvela kamva kukuqaqamba okubuhlungu kumphezulu womzimba.
- Kubaluleke kakhulu: Ukulimala okuncinci, ukuwa, ukuhlatywa, kwaye ngakumbi ii-biopsy zinokwenza isifo sibe mandundu kakhulu.
- Ukuba ukrokrela ukuba umntwana wakho unale mpawu, bonana nogqirha ngoko nangoko uze uchaze izinto ozikrokrelayo malunga ne-FOP.
- Nangona kungekho nyango lwesi sifo okwangoku, kukho unyango olunokunceda ukulawula iimpawu nokwenza ubomi bube lula.
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