Ukuba unesifo esihlala ixesha elide, okanye esinganyangekiyo, esifana ne-ATTR amyloidosis, udinga iqela elikhulu loogqirha kunye neengcali zempilo ukuze bakuncede usilawule. Oku kuyinyani ngakumbi kubantu abane-hATTR amyloidosis. Esi sisifo semfuza. Okwenzekayo kukuba iproteni engaqhelekanga ebizwa ngokuba yi-amyloid iqokelelana kwizitho ezibalulekileyo ezifana nentliziyo yakho, izintso, inkqubo yemithambo-luvo kunye namathumbu. Ngoko ke, ngenxa yokuba esi sifo sichaphazela iindawo ezininzi zomzimba wakho, iqela lakho lezempilo le-hATTR liya kubandakanya iingcali ezininzi.
Ngubani okwiqela lakho lezonyango le-hATTR amyloidosis?
Ngoku makhe sijonge iingcali zonyango eziphambili eziza kukunceda ngempilo yakho. Xa bebonke, baza kukunceda ulawule imeko yakho kakuhle.
Ingcali yezifo zengqondo
Kwi-hATTR, imeko ebizwa ngokuba yi-peripheral neuropathy ixhaphake kakhulu. Ngamafutshane, oku kukonakala kwemithambo-luvo esezandleni zakho, ezinyaweni, nasemilenzeni esezantsi. Unokufumana iimpawu ezifana nezi:
- Intlungu
- Ukuba ndindisholo
- Ukudumba
- Ubuthathaka kwimilenze
- Ivakala ngathi ihlatywa njengenduku.
Njengoko isifo siqhubeka, izihlunu zakho zinokuba lukhuni kwaye zibe buthathaka, nto leyo eyenza kube nzima ukuhamba nokwenza nantoni na efuna izakhono zomzimba ezisemgangathweni.
Ingcali yezifo zengqondo iza kwenza uvavanyo, olufana novavanyo lokuqhuba imithambo-luvo, ukuze ijonge ngokusondeleyo ukusebenza kwemithambo-luvo yakho. Oku kuya kunceda ekuqinisekiseni ukuba unesifo semithambo-luvo kwaye sibi kangakanani.
Uninzi lweendlela zonyango ezivunyiweyo ze-hATTR zinokukunceda nokunyanga imeko yakho yemithambo-luvo. Ugqirha wakho angakunika nezinye iindlela zokunceda ngentlungu yemithambo-luvo.
| Udidi lweziyobisi | Imizekelo yeziyobisi |
|---|---|
| Unyango oluvunyiweyo lwe-hATTR | Eplontersen (Wainua), Inotersen (Tegsedi), Patsiran (Onpattro), Vutrisiran (Amvuttra) |
| Amayeza eentlungu zemithambo-luvo | I-Amitriptyline, iDuloxetine (iCymbalta), iGabapentin (iNeurontin), iPregabalin (iLyrica) |
Ingcali yentliziyo
Lo gqirha unyanga izifo zentliziyo kunye nemithambo yegazi. Abantu abane-hATTR basengozini enkulu yesifo sentliziyo. Oku kungenxa yokuba iidipozithi ze-amyloid zinokuqokelelana entliziyweni. Oku kunokukhokelela kwezi meko zilandelayo:
Eyona nto ibalulekileyo kukwazi ezi mpawu kwaye ufumane ingcebiso kagqirha ngokukhawuleza ukuba kuyimfuneko.
| Iziphumo ezinokubakho entliziyweni | Ingcaciso elula |
|---|---|
| Ukungaphumeleli kwentliziyo edibeneyo | Intliziyo ibuthathaka kwaye ulwelo luqokelelana emiphungeni nakwezinye izicwili. |
| I-Hypertrophic Cardiomyopathy | Ukutyeba kwemisipha yentliziyo. |
| Isifo sentliziyo seCoronary | Ukuvaleka kwemithambo yegazi ehambisa igazi entliziyweni. |
| I-Arrhythmia | Ukubetha kwentliziyo okungaqhelekanga. |
| I-Syncope | Ukudinwa okanye ukuquleka. |
Ukuba ufunyaniswe une-hATTR, ugqirha wakho wentliziyo uza kwenza iimvavanyo ezininzi ukuze abone ukuba intliziyo yakho isebenza kakuhle kangakanani. Ezi zinokubandakanya i- echocardiogram , i- MRI scan, uvavanyo lokuhamba ngeenyawo lwemizuzu emi-6, kunye novavanyo lwegazi. Ukuba intliziyo yakho ibuthathaka, uya kunikwa amayeza okulawula imeko, anjenge-diuretics, ityuwa kunye nolwelo oluncinci, kwaye mhlawumbi ne-pacemaker .
Ingcali yamehlo
Ukuba une-hATTR, kubalulekile ukubona ingcali yamehlo rhoqo. Malunga ne-20% yenguqu yemfuza ebangela i-hATTR ichaphazela amehlo. Oku kunokubangela iimpawu ezifana nezi:
- Iifloaters ezimnyama (ukubona amachaphaza amnyama edada phambi kwamehlo)
- Amehlo omileyo
- I-Glaucoma okanye uxinzelelo lwamehlo oluphezulu
- Ukungacaci kakuhle kwe-vitreous (ukufiphala kwejeli ecacileyo ezalisa iliso)
- Olunye utshintsho lombono
Ukuba kuyimfuneko, ugqirha wakho wamehlo angenza utyando olubizwa ngokuba yi-trabeculectomy ukunyanga i-glaucoma. Angenza notyando olubizwa ngokuba yi-vitrectomy ukususa ijeli esweni.
Umcebisi wezeMvelo
Ukuba ugqirha wakho ukrokrela ukuba une-hATTR, uza kukuthumela kumcebisi wezemfuza . Banokuvavanya utshintsho lwezakhi zofuzo olunokubangela esi sifo. Kwakhona, ukuba umntu okwintsapho yakho esondeleyo (umzali, umntakwenu, okanye umntwana) ufunyaniswe ene-hATTR, ngokuqinisekileyo kufuneka uvavanywe. Oku kungenxa yokuba amalungu osapho asondeleyo anethuba elingama-50% lokufumana olu tshintsho lwezakhi zofuzo. Umcebisi wezemfuza uza kukuchazela ezi mvavanyo aze axoxe nawe xa iziphumo zifikile.
Amanye amalungu abalulekileyo eqela lakho lezonyango
Ukongeza kwiingcali ezikhankanyiweyo apha ngasentla, kukho nezinye ezininzi ezidlala indima ebalulekileyo kwimpilo-ntle yakho.
| Iingcali | Bangakunceda njani? |
|---|---|
| Ingcali yezifo ze-nephrological | Malunga nesinye kwisithathu sabantu abane-hATTR banokufumana i-amyloid deposits kwizintso zabo. Kusenokungafuneki ukuba ubone le ngcali de ube neempawu zesifo sezintso. Ugqirha wakho oyintloko uza kujonga ukusebenza kwezintso zakho ngovavanyo lwegazi lonyaka (njenge -serum creatinine ). Ukuba ezi mvavanyo aziqhelekanga, uza kuthunyelwa kwi-nephrologist. |
| Ingcali ye-Orthopedic | Izigulane ezine-haATTR zisengozini enkulu yokuba ne -carpal tunnel syndrome . Oku kunokubangelwa kukufakwa kwe-amyloid ezihlahleni. Iingalo kunye nemithambo zinokucetyiswa xa ulele. Kwiimeko ezinzima, utyando lunokufuneka. |
| Ingcali yoNyango loMzimba/loMsebenzi | I-hATTR inokwenza kube nzima ukuhamba nokwenza imisebenzi yemihla ngemihla. Iingcali zonyango lomzimba kunye neengcali zonyango lomsebenzi zinokukunceda wenze le misebenzi ibe lula. Izifundo zibonise ukuba ukudibanisa ezi ndlela zonyango kunye nezinye iindlela zonyango, ezifana namayeza, kunokuvelisa iziphumo ezilungileyo. |
| Umboneleli Wokhathalelo Oluphambili | Nokuba ubona iingcali ezininzi, ugqirha wakho wosapho okanye ugqirha oyintloko uyinxalenye ebalulekileyo yeqela lakho. Angenza uvavanyo lwakho lwempilo lonyaka, akunyange xa ugula, aze asebenze njengenkokeli yeqela lakho lezempilo, enxibelelana nabo bonke abanye oogqirha. |
Rhoqo, uya kukwazi ukufumana zonke iinkonzo ozifunayo kwiziko lezonyango okanye esibhedlele esikhulu esigxile ekunyangeni i-hATTR amyloidosis. Oku kwenza kube lula kubo bonke oogqirha bakho ukuba basebenzisane njengeqela. Thetha nogqirha wakho oyintloko malunga nokulungelelanisa unyango lwakho.
Umyalezo Wokuya Ekhaya
- I-hATTR amyloidosis sisifo esintsonkothileyo esichaphazela amalungu amaninzi emzimbeni, ngoko ke kufuneka iqela loogqirha abanobuchule obahlukeneyo ukuze basinyange.
- Iqela lakho lezonyango lingabandakanya iingcali kwicandelo elifana ne-neurology, i-cardiology, i-ophthalmology, kunye ne-nephrology.
- Ugqirha wakho oyintloko (ugqirha wosapho) likhonkco eliphambili elidibanisa lonke eli qela.
- Thetha ngokukhululekileyo neqela lakho lezonyango malunga nemeko yakho, unyango, kunye nazo naziphi na izinto ezikuxhalabisayo. Musa ukoyika ukubuza imibuzo. Ulilungu elisebenzayo leqela lakho lezonyango.
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