Ese ufite ikibazo cya hATTR Amyloidosis? Reka twitegure kubonana na muganga wawe bwa mbere.

Ni ibisanzwe kumva ufite ubwoba, urujijo, no kugira ibibazo byinshi iyo umenye ko ufite indwara idakunze kugaragara yitwa ' hATTR amyloidosis '. Ntutinye, nubwo izina ryaba rigoye. Muri iyi nkuru, tuzagerageza kubigusobanurira mu buryo bworoshye. Cyane cyane niba ari ubwa mbere ugiye kwa muganga kuri iyi ndwara, tuzaganira ku buryo bwo kuyitegura neza.

Mu magambo make, hATTR Amyloidosis ni iki?

Mu magambo make, ni indwara umuntu avukana iterwa n'impinduka cyangwa impinduka muri gene yitwa TTR mu mubiri we. Iyi mpinduka muri gene ituma poroteyine idasanzwe yitwa amyloid ivuka mu mubiri wacu.

Tekereza nk'aho umuyoboro w'amazi uzibye, izi poroteyine za amiloide zitangira kwirundanya buhoro buhoro mu ngingo z'ingenzi nk'umutima wacu, impyiko, uturemangingo tw'imitsi, n'urwungano ngogozi. Iyo zirundanyije, izo ngingo ntizishobora gukora akazi kazo gasanzwe neza. Ni bwo ibimenyetso bitangira kugaragara.

Witegura ute mbere yo kujya kwa muganga?

Ni ngombwa cyane kugira imyiteguro mike mbere yo kubonana na muganga wawe bwa mbere. Itondere ibi bintu.

1. Menya neza amateka y'ubuzima bw'umuryango wawe

Iki ni cyo kintu cy'ingenzi cyane. hATTR Amyloidosis ni indwara ivuka mu mizi. Mu buvuzi, tuyita 'autosomal dominant'. Ibi bivuze ko niba umwe mu babyeyi bawe afite ihinduka ry'uturemangingo tw'umubiri rijyanye n'iyi ndwara, nawe ufite amahirwe yo kuyiragwa ku kigero cya 50%.

Kubwibyo, niba mama wawe, so, abavandimwe bawe, cyangwa abana bawe bafite iyi ndwara, ni byiza kuganira na muganga wawe ku bijyanye no gupima imiterere y’uturemangingo, nubwo waba udafite ibimenyetso.

2. Jyana raporo zose z'ibizamini ufite.

Niba waramaze gupimwa ingirabuzimafatizo, nko gupimwa amaraso cyangwa gupimwa amacandwe, hagashakishwa ingirabuzimafatizo ya TTR, menya neza ko uzanye izo raporo zose. Hari ihinduka ry’uturemangingo twa TTR rirenga 120. Ihinduka ry’uturemangingo rimwe na rimwe rikunze kugaragara mu moko amwe n’amwe.

Ni ibihe bipimo muganga ashobora gutumiza?

Niba ukeka ko ufite iyi ndwara cyangwa wamaze kuyisuzuma, muganga wawe azabanza kugusuzuma neza (isuzuma ry’umubiri). Byongeye kandi, ibizamini bikurikira bishobora gutangwa kugira ngo byemezwe indwara kandi bigenzure uko ihagaze:

• Isuzuma ry'indwara : Iki ni cyo kizamini cy'ingenzi cyane kugira ngo hemezwe indwara. Ibi akenshi bisaba gufata agace gato cyane k'umubiri mu nda yawe cyangwa ahandi hantu ukagasuzuma ukoresheje mikorosikopi kugira ngo urebe niba hari imiterere ya amyloid.
• Ibipimo by'amaraso n'inkari: Ibi bizamini bireba poroteyine runaka mu maraso cyangwa mu nkari zishobora kugaragaza iyi ndwara.
• Scintigraphy: Iyi ni scan yihariye yo gusuzuma niba hari amyloid mu mutima.
• Gusuzuma imikorere y'umutima : Iyo indwara imaze kumenyekana, hashobora gukorwa isuzuma nka echocardiogram cyangwa MRI y'umutima kugira ngo harebwe ingano y'ibyangiritse ku mutima.
• Ibizamini byo kuyobora imitsi: Ibi bizamini bifasha kumenya niba hari ibyangiritse mu mitsi.

Muganga arimo kukubaza ibimenyetso byawe!

Muganga azakubaza ati “Umeze ute?” Ni ngombwa cyane kumubwira ibimenyetso byose ushobora kugira, ndetse n’ibito cyane. Ibi biterwa nuko iyi ndwara ishobora gufata ibice byinshi by’umubiri. Niba ufite kimwe muri ibi bimenyetso bikurikira, bibwira muganga wawe.

Ni ubuhe buryo bwo kuvura ibi?

Mu myaka myinshi ishize, uburyo bwonyine bwo kuvura iyi ndwara bwari ugutera umwijima . Ku bw'amahirwe, ubu hari imiti myinshi igezweho ishobora kugenzura umuvuduko w'iyi ndwara. Muganga wawe azahitamo uburyo bwo kuvura hashingiwe ku bintu bitatu:

1. Ibimenyetso byawe

2. Urugingo rwagize ikibazo

3. Icyiciro cy'indwara

Indwara ya hATTR igabanyijwemo ibice bine by'ingenzi.

• Icyiciro cya 0:Impinduka mu ngirabuzimafatizo ya TTR irahari, ariko nta bimenyetso biragaragara.
• Icyiciro cya mbere: Ushobora kugenda nk'uko bisanzwe, ariko hari ibimenyetso byoroheje by'imitsi nko kugira ibinya no kubabara amaguru n'ibirenge.
• Icyiciro cya II: Bisaba ubufasha kugira ngo umuntu agende. Ibimenyetso by'imitsi nabyo birakomeye cyane mu maboko, amaguru, no ku gituza.
• Icyiciro cya gatatu: Ibimenyetso birakomeye cyane ku buryo umuntu aguma mu igare ry'abamugaye cyangwa mu buriri.

Hari uburyo bwinshi bwo kuvura:

• Ibice bibuza imiterere y’uturemangingo twa TTR: Iyi miti ikora mu kugabanya umusaruro wa poroteyine ya TTR ifite ikibazo. Ibi bigabanya ishyirwa rya amyloid. Ingero: `Patisiran (Onpattro)`, `Inotersen (Tegsedi)`, `Vutrisiran (Amvuttra)`.
• Ibitera imbaraga bya TTR: Ibi bikora mu kubuza poroteyine ya TTR kuzingira nabi no gukora ububiko bwa amyloid. Ingero: `Tafamidis (Vyndamax, Vyndaqel)`.
• Imiti igabanya ubukana bwa Amyloid fibril: Iyi miti ifasha mu gusenya imiterere ya amyloid yamaze kwirema. Inyinshi muri zo ziracyari mu cyiciro cy'ubushakashatsi.

Ese wanyohereza ku bandi bahanga?

Yego. Kubera ko iyi ndwara ifata ibice bitandukanye by'umubiri, muganga wawe ashobora kukwohereza ku bandi baganga b'inzobere kugira ngo bavure ibimenyetso bitandukanye.

• Inzobere mu by'umutima: Ku bijyanye n'imitsi y'umutima n'ibimenyetso by'indwara z'umutima.
• Inzobere mu ndwara zo mu gifu: Ku ndwara nko gucibwamo no kutagira impatwe.
• Umuganga w'inkari: Ku bibazo by'inkari .
• Muganga w'amaso: Ku bibazo byo kubona.
• Inzobere mu by'amagufwa: Ku ndwara nka syndrome ya carpal tunnel.

Muganga wawe azakubwira kandi uko indwara igenda ikwirakwira. Ibi bishobora kubaho hagati y'imyaka 3 na 15 nyuma yo kuyisuzuma. Ariko wibuke ko biterwa n'impinduka mu ngirabuzimafatizo ufite ndetse n'ingingo zigize ingaruka. Kubera ko uburyo bushya bwo kuvura bukomeje gukorwaho ubushakashatsi, hari icyizere cy'ejo hazaza.