Izinto ezi-6 zokubuza ugqirha wakho ukuba unyango lwakho lwe-AHP alusebenzi

Umxholo

• Ndazi njani ukuba ndinolunye uhlaselo?
• Kuzakufuneka ndiye esibhedlele?
• Zeziphi iindlela zonyango ezikhoyo eofisini yakho?
• Ndidinga iphlebotomy?
• Ngawaphi amayeza amiselweyo anceda nge-AHP?
• Ngaba lukhona utshintsho kwindlela yokuphila oluya kunceda?
• Yise kude

Unyango lwe-hepatic porphyria (AHP) etsoloyo iyahluka ngokweempawu zakho nakwimpilo iyonke. Ukulawula imeko yakho ngundoqo ekuthinteleni iingxaki.

Nangona kunjalo, kubalulekile ukuba uthethe nogqirha wakho ukuba iimpawu zakho ziya zisiba mandundu okanye uhlaselwa ngakumbi kunesiqhelo.

Cinga le mibuzo ilandelayo njengesiqalo xa uncokola nogqirha wakho malunga nonyango lwe-AHP.

Ndazi njani ukuba ndinolunye uhlaselo?

Ngaphandle kwesicwangciso esibanzi solawulo, uhlaselo lwe-AHP lusenokwenzeka.

Iimpawu zinokwenzeka nanini na xa umzimba wakho ungenayo ihemme eyaneleyo yokwenza iiproteni zehemoglobin kwiiseli zakho ezibomvu zegazi. Ezi proteni zinye ziyafumaneka kwimisipha nentliziyo yakho.

Buza ugqirha wakho ukuba ngaba kukho naziphi na iimpawu ekufuneka ujonge kuzo ezinokubonisa uhlaselo lwe-AHP. Oku kunokubandakanya:

• iintlungu eziya zisiba mandundu
• intlungu zesisu
• isicaphucaphu
• ukugabha
• ubunzima bokuphefumla
• ukonyuka koxinzelelo lwegazi kunye nokubetha kwentliziyo
• ukuphelelwa ngamanzi emzimbeni
• ukuxhuzula

Kuzakufuneka ndiye esibhedlele?

Ugqirha wakho unokucebisa ukutyelela esibhedlele ukuba uhlaselwa yi-AHP. Iimpawu ezinobumnene zisenokungagunyazisi ukulaliswa esibhedlele kanye njengokuba kuhlaselwa ngokuqatha.

Kuya kufuneka uye esibhedlele ukuba utshintsha kakhulu uxinzelelo lwegazi okanye ukubetha kwentliziyo, ukuxhuzula, okanye ulahlekelwe sisazela. Intlungu ebukhali inokuqwalaselwa esibhedlele, nayo.

Nje ukuba usesibhedlele, usenokunikwa unyango ngemithambo ukuze unqande ngokukhawuleza uhlaselo. Ugqirha wakho unokukujonga ukuba uneengxaki ezinzima kwizintso zakho okanye isibindi.

Ukuba awuqinisekanga ukuba ufuna ukuya esibhedlele, tsalela ugqirha okanye ubacele ukuba bakunike inombolo yefowuni yasemva kweeyure onokuthi ubize iingcebiso.

Zeziphi iindlela zonyango ezikhoyo eofisini yakho?

Uninzi lonyango olungxamisekileyo olukhoyo lwe-AHP esibhedlele lukwakhona kwiofisi kagqirha wakho.

Ezi zihlala zinikwa ngeedosi ezisezantsi njengenxalenye yesicwangciso sesondlo, endaweni yonyango olungxamisekileyo.

Olu hlobo lonyango lubandakanya:

• Iswekile efakwa ngaphakathi: kunceda ukulawula amanqanaba eglucose ukuba awufumani ngokwaneleyo ukwenza iiseli ezibomvu zegazi
• hemin efakwa ngaphakathi: Ifom ye-heme eyenziweyo ilawulwa amatyeli ambalwa ngenyanga ukukhusela uhlaselo lwe-AHP
• Inaliti ye-hemin: uhlobo lolawulo lwe-heme olucetyiswayo ukuba umzimba wakho wenza ii-porphyrins ezininzi kwaye awonelanga nge-heme
• iqulathoInkqubo yokususa igazi ejolise ekususeni i-iron egqithisileyo emzimbeni
• I-gonadotropin-ekhulula i-hormone agonistAmayeza amiselweyo asetyenziselwa abantu ababhinqileyo abaphulukana ne-heme ngexesha lokuya exesheni
• Unyango lwemfuza: oku kubandakanya i-givosiran, eyehlise inqanaba apho iimveliso zetyhefu ziveliswa esibindini

Ndidinga iphlebotomy?

I-phlebotomy isetyenziswa kuphela kwi-AHP ukuba une-iron eninzi egazini lakho. Intsimbi ibalulekile ekudalweni nasekugcinweni kweeseli ezibomvu zegazi, kodwa amanqanaba aphezulu anokubangela uhlaselo lwe-AHP.

Phlebotomykunciphisa iivenkile zentsimbi, eziphucula i-heme synthesis ephazanyiswe yi-ferro-Mediated inhibition ye-uroporphyrinogen decarboxylase. Ukuvavanywa rhoqo kwegazi kunokunceda ekuqinisekiseni ukuba i-iron ikwinqanaba elifanelekileyo.

Ukuba ufuna iphlebotomy, inokwenziwa kwizigulana ezingalaliswayo. Ngexesha lenkqubo, ugqirha wakho uyakususa elinye igazi lakho ukuze alahle i-iron engaphezulu.

Ngawaphi amayeza amiselweyo anceda nge-AHP?

Ukuba unamaqondo asezantsi eswekile kodwa awuyifuni i-glucose IV, ugqirha wakho unokucebisa iipilisi zeswekile.

Ezinye i-hormone agonists zinokunceda abantu basetyhini abasexesheni. Ngexesha lokuya esikhathini, unokuba semngciphekweni wokulahlekelwa yihemme engaphezulu.

Ugqirha wakho unokumisela i-leuprolide acetate, uhlobo lwe-gonadotropin-ekhulula i-hormone agonist. Oku kuya kunceda ukuthintela ukulahleka okungaphezulu kwehemme ngexesha lokuya esikhathini, elinokuthintela uhlaselo lwe-AHP.

Unyango lwe-Gene olunjenge givosiran (Givlaari) lunokumiselwa ukunciphisa imveliso yesibindi enetyhefu. Igivosiran evunyiweyo ngoNovemba 2019.

Ngaba lukhona utshintsho kwindlela yokuphila oluya kunceda?

Ukutya, amayeza, kunye nokukhetha indlela yokuphila kunokubangela i-AHP ngamanye amaxesha. Ukunciphisa ezi zinto zibangela-okanye ukuziphepha- kunokunceda ukuxhasa isicwangciso sakho sonyango kunye nokunciphisa umngcipheko wokuhlaselwa.

Tshela ugqirha wakho malunga nawo onke amayeza, izongezo, kunye neemveliso ozisebenzisayo.

Nokuba isongezelelo sokuthenga singaphazamisa imeko yakho. Ezinye zezona zinto zixhaphakileyo zezokutshintsha kwehomoni kunye nezongezelelo zentsimbi.

Ukutshaya nokusela kunokwenza i-AHP yakho ibe mandundu. Akukho sixa sokutshaya sisempilweni. Kodwa abanye abantu abadala abane-AHP banakho ukusela ngokumodareyitha. Buza ugqirha wakho ukuba ngaba kunjalo kuwe.

Zama ukunamathela kwisicwangciso esifanelekileyo sokutya kunye nokuzilolonga. Ukuba unayo i-AHP, ukutya ngokutya kunokuyigqiba i-heme kwaye kuyenze mandundu iimpawu zakho.

Ukuba ufuna ukunciphisa umzimba, cela ugqirha wakho akuncede wenze isicwangciso sokulahleka kwesisindo esingayi kwenza mandundu iimpawu zakho.

Okokugqibela, yenza isicwangciso sokunceda uxinzelelo kwaye usisebenzise. Akukho mntu uphila ngaphandle koxinzelelo kwaye unemeko enzima njenge-AHP enokudala uxinzelelo ngakumbi. Xa uxinezelekile, umngcipheko wokuhlaselwa.

Yise kude

I-AHP sisifo esinqabileyo nesintsonkothileyo. Kusekho okuninzi okunokufundwa ngako. Kubalulekile ukuhlala unxibelelana nogqirha wakho kwaye ubaxelele ukuba awucingi ukuba icebo lakho lonyango liyasebenza.

Ukuthetha nogqirha wakho kunokubanceda baqonde imeko yakho kwaye bacebise unyango olusebenzayo.