Ese nawe ufite ikibazo gituma amaguru yawe akomera kandi agacika intege? Reka tuvuge kuri Hereditary Spastic Paraplegia

Ese hari igihe wumva amaguru yawe ahindagurika gato iyo ugenda, nk'aho nta bubasha ufite bwo kuyagenzura? Ese ugwa ku kintu gito, cyangwa ugorwa no guterura amaguru yawe iyo uzamuka ingazi? Ibi bishobora kuba atari ibindi bintu gusa. Uyu munsi tugiye kuvuga ku ndwara igira ingaruka ku maguru, igoye gato, ariko ni ingenzi cyane kubimenya. Iyo ni indwara yitwa "Hereditary Spastic Paraplegia".

Iyi ndwara yo kurema ubumuga bwo mu nda ni iyihe?

Mu magambo make, iri ni itsinda ry'indwara zivukanwa . "Iherewe" bivuze ko ushobora kuragwa iyi ndwara binyuze mu ngirabuzimafatizo za nyoko, so, cyangwa abandi bagize umuryango wawe. "Spastic paraplegia" bivuze gukomera (`(spasticity)`) no gucika intege buhoro buhoro kw'imitsi yo mu maguru yawe . Ibi bimenyetso ntibiza mu buryo butunguranye, ahubwo bigenda byiyongera uko igihe kigenda gihita .

Mu ntangiriro, ushobora kumva umerewe nabi iyo ugenda. Ushobora kugwa ku kintu runaka cyangwa ukagwa ku ibuye rito riri mu muhanda. Ibi biterwa nuko udashobora guterura ukuguru kwawe neza. Uko igihe kigenda gihita, iyi ndwara ishobora kwiyongera kandi kugenda bishobora guteza akaga. Hari abantu bashobora gukenera gukoresha inkoni, igare ry'abagenda, cyangwa se amagare y'abamugaye kugira ngo babafashe kugenda nyuma y'imyaka mike.

Ushobora kumva abaganga rimwe na rimwe bakoresha andi mazina kuri iyi ndwara:

• `(Paraparesis yo mu muryango)`
• `(Indwara yo kuvura indwara ya spastic paralysis)`
• `(Strümpell-Lorrain syndrome)`

Izina wayita iryo ari ryo ryose, risobanura indwara imwe.

Ese hari ubwoko bwa `(Hereditary Spastic Paraplegia)`?

Yego, hari ubwoko burenga 80 bw'iyi ndwara. Buri bwoko buhabwa inomero, nka `(SPG1)`, `(SPG2)`, hakurikijwe uko yavumbuwe. Ariko abaganga babigabanyamo amatsinda abiri y'ingenzi:

1. Ubwoko butoroshye (cyangwa butagira inenge): Abantu bagera kuri 90 ku ijana barwaye iyi ndwara bafite ubwo bwoko bworoshye . Ibimenyetso by'ingenzi ni ugukomera kw'imitsi (`(spasticity)`) n'intege nke mu maguru twavuzeho mbere.

2. Ubwoko bw'indwara zigoye: 10% bisigaye bifite ubwo bwoko bugoye . Uretse gukomera kw'amaguru no kunanirwa, ushobora no kugira ibindi bimenyetso byinshi by'indwara z'imitsi bifitanye isano n'ubwonko bwawe, uruti rw'umugongo, n'imitsi .

Iyi ndwara ikunze kugaragara gute?

Biragoye kuvuga neza umubare w'abantu bafite "Hereditary Spastic Paraplegia". Ibi biterwa nuko ibimenyetso bisa n'iby'izindi ndwara , kandi akenshi ntibisuzumwa neza . Abashakashatsi bavuga ko hagati y'umuntu umwe (`1`) na batanu (`5`) mu bantu ibihumbi ijana ku isi bashobora kuba bafite iyi ndwara.

Ni ibihe bimenyetso bya `(Hereditary Spastic Paraplegia)`?

Ibimenyetso bibiri by'ingenzi by'iyi ndwara bigira ingaruka ku mitsi yo mu maguru yawe:

• Gucika intege
• Intege nke

Ariko, bitewe n'ubwoko bw'indwara, hari n'ibindi bimenyetso bishobora kugaragara.

Ibindi bintu by’ingenzi bigize ubwoko bw’ibintu bidasobanutse:

• Kubura ibyiyumvo mu maguru, cyane cyane mu gice cyo hasi cy'ibirenge .
• Kugorwa no kugenzura inkari .
• Kumva ukeneye kunyara cyangwa kwituma mu buryo butunguranye, kabone n'iyo uruhago cyangwa amara byaba bitaruzura.

Ibindi biranga ubwoko bw'indwara ikomeye:

Muri ubu bwoko, ibimenyetso biratandukanye cyane. Urugero:

• Kugabanuka k'imikorere y'ubwonko nko gutekereza no kwibuka (dementia) .
• Ingorane zo kugira uburinganire no kudashobora guhuza ibikorwa (ataxia).
• Ibibazo by'amaso nko kutabona neza, indwara ya katarakte, kugabanuka k'amaso, cyangwa retinopathy.
• Gutakaza amatwi (`(Gutakaza amatwi)`) .
• Ingorane zo kwiga, ubumuga bwo mu mutwe cyangwa gutinda mu mikurire.
• Gutakaza buhoro buhoro imitsi (`(atrophy)`) .
• Kwangirika kw'imitsi yo mu maboko no ku maguru (peripheral neuropathy) .
• Kugorwa no guhumeka (kunanirwa guhumeka), kugorwa no kuvuga (aphasia), cyangwa kugorwa no kumira (kugorwa no kumira) .
• Ibimenyetso by'igicuri (`(Indwara zo mu mutwe)`) .
• Hari abantu bashobora kugira uruhu rukomeye kandi rwumye rusa n'ibicurane by'amafi (`(ichthyosis vulgaris)`) .

Tekereza ukuntu bigoye kugira kimwe cyangwa bibiri muri ibi bimenyetso. Bityo rero, kwihanganira byinshi muri ibi bimenyetso ni ikibazo gikomeye.

Ni iki gitera `(Hereditary Spastic Paraplegia)`?

Impamvu nyamukuru ibi ni impinduka mu magene, byitwa ubwoko bw'uturemangingo . Imikorere yose y'umubiri wacu igenzurwa n'amabwiriza yakirwa n'amagene. Iyo ayo magene ahindutse, amabwiriza yakirwa na poroteyine aba atari yo . Icyo gihe izo poroteyine ntizishobora gukora akazi kazo neza. Ibi bigira ingaruka ku mikorere y'imitsi yo mu ruti rw'umugongo. Impinduka zitandukanye mu magene zishobora gutera iyi ndwara.

Iyi ndwara, yitwa "Hereditary Spastic Paraplegia", irazwe . Ibi bivuze ko ugomba kuba warazwe nibura kopi imwe y'iyi gene n'ababyeyi bawe. Hari uburyo bwinshi ibi bishobora kubaho:

• `Autosomal dominant`: Ibi bibaho iyo umwe mu babyeyi bawe ari we wenyine uvukana iyo mico.Indwara ibaho iyo hari gene itera iyi ndwara.
• `Autosomal recessive`: Muri iki gihe, indwara ikwirakwira gusa iyo uzunguye gene kuri nyoko na so. Iyo uyizunguye ku mubyeyi umwe gusa, ushobora kuba uri nyirabayazana w'iyi ndwara, ariko ntugaragaze ibimenyetso.
• `X-linked`: Muri ibi, umubyeyi (umubyeyi w’umugore) yohereza iyi gene ku mwana we w’umuhungu binyuze muri chromosome y’igitsina.
• Umurage wa Mitochondria: Muri ibi, umubyeyi arandurira umwana we (uko igitsina cye cyaba kiri kose) binyuze muri gene ya mitochondria .

Nubwo bidakunze kubaho, rimwe na rimwe izi mpinduka mu ngirabuzimafatizo zishobora kubaho ku buryo butunguranye, bivuze ko zishobora kubaho ku muntu mushya udafite amateka y'umuryango (sporadic) .

Ni nde uri mu kaga gakomeye ko kwandura iyi ndwara?

Umuntu wese ashobora kurwara iyi ndwara, yitwa "Hereditary Spastic Paraplegia." Ariko, niba umwe mu babyeyi bawe cyangwa bombi bafite ihinduka ry'uturemangingo tw'umubiri rijyana n'iyi ndwara, uba uri mu kaga gakomeye ko kurwara iyi ndwara .

Ni izihe ngorane zishobora guterwa n'iyi ndwara?

Hereditary Spastic Paraplegia ishobora gutera izindi ngaruka mbi nyinshi, harimo:

• Kubabara umugongo n'amavi.
• Ibirenge bihora bikonje.
• Kumva unaniwe igihe cyose (`(Umunaniro)`) .
• Umusatsi uhinduka kandi ugahinduka mugufi.

Kubana n'ingorane zo kugenda n'amaguru, mu gihe ibintu byari byoroshye ubu bitoroshye, rimwe na rimwe bikaba byanateza akaga, bishobora kugira ingaruka zikomeye ku buzima bwawe bwo mu mutwe . Ibi bishobora gutera indwara nko guhangayika no kwiheba . Niba wumva ufite iminsi mibi myinshi kuruta iminsi myiza, ntugatinye kubibwira muganga wawe . Bashobora kukwemerera umujyanama w'ubuzima bwo mu mutwe ushobora kugufasha gucunga uburyo iyo ndwara ikora ku marangamutima yawe.

Iyi ndwara `(Hereditary Spastic Paraplegia)` ipimwa ite?

Umuganga azakora isuzuma ry’umubiri, isuzuma ry’imitsi, n’ibindi bizamini byihariye kugira ngo amenye iyi ndwara. Muri ibi bizamini, muganga azasuzuma byimbitse ibimenyetso byawe n’amateka y’ubuzima bwawe n’ubw’umuryango wawe. Azareba kandi ibi bikurikira:

• Ubushobozi bwo kumva ikintu uko gikozweho.
• Kuringaniza umubiri.
• Guhuza ibikorwa.
• Imikorere yo mu mutwe.
• Imikorere ya moteri (ubushobozi bwo kugenda hirya no hino).
• Imitekerereze yo kwisubiraho.

Nyuma y'ibi bintu, niba muganga akeka ko hari indwara yo mu mutwe yitwa "Hereditary Spastic Paraplegia" (indwara yo mu bwonko), ashobora gutanga inama ku bipimo bimwe na bimwe nka:

• Electromyography (EMG): Ibi bikubiyemo gushyira utuntu duto mu mitsi yawe no kwandika uburyo imitsi yawe ikira ibimenyetso bito by'amashanyarazi. Ibi bishobora kuguha igitekerezo cyiza cy'uko imitsi n'imitsi yawe bikora .
• Gupima imiterere y'uturemangingo : Hafatwa icyitegererezo cy'amaraso cyangwa amacandwe kugira ngo harebwe niba hari impinduka mu miterere y'uturemangingo zitera iyo ndwara .
• Isuzuma rya Magnetic Resonance (MRI): Ibi bikoresha imiraba ya rukuruzi, imiraba ya radiyo, na mudasobwa kugira ngo bikore amashusho arambuye y’ingingo z’ubwonko bwawe n’umugongo wawe . Bishobora kugaragaza ibibazo mu bwonko bwa bamwe mu bantu bafite HSP ikomeye.
• Gupfumura umugongo (Lumbar puncture) : Muri ibi, urushinge ruto rushyirwa mu mugongo wo hasi hanyuma agace gato k'amazi yo mu bwonko (CSF) kagakurwa mu gace gakikije ubwonko bwawe no mu ruti rw'umugongo kugira ngo bipimwe.

Hari igihe bishobora gufata igihe kugira ngo iyi ndwara imenyekane neza , kuko ibimenyetso bya `(Hereditary Spastic Paraplegia)` bishobora gusa cyane n'ibimenyetso by'izindi ndwara nka:

• Indwara yo mu bwonko (`(Indwara yo mu bwonko)`)
• Sclerosis nyinshi (`(Sclerosis nyinshi)`)
• `(Indwara ya Pelizaeus-Merzbacher)`
• Gucika intege k'umugongo (spinal stenosis)

`(Hereditary Spastic Paraplegia)` ivurwa ite?

Ikibabaje ni uko nta muti uhari wa Hereditary Spastic Paraplegia. Ariko hari uburyo bwo kuvura bushobora gufasha mu kugenzura ibimenyetso no koroshya ubuzima. Muri ubwo buryo harimo:

• Imiti: Imiti igabanya imitsi igoramye (imitsi iruhura), inshinge z'uburozi bwa botulinum, na baclofen.
• Ubuvuzi bw'umubiri : Imyitozo ngororamubiri yo gukomeza imitsi, kongera ubworoherane, no kunoza kuringaniza umubiri.
• Ubuvuzi bw'akazi : Gutanga amahugurwa n'ibikoresho kugira ngo bigufashe gukora imirimo ya buri munsi byoroshye.
• Inkweto zihariye zishyigikirwa (Orthotics) : Kugira ngo kugenda byoroshye no kugumana umwanya ukwiye w'ikirenge.
• Ibikoresho bifasha mu kugenda: inkoni, inkoni zo gupfuka, imigozi yo gupfuka, cyangwa intebe y'abamugaye.

Bitewe n'imiterere y'ibimenyetso byawe, muganga wawe ashobora kukugira inama y'ubundi buryo bwo kuvura.

Ese ejo hazaza hazaba hameze hate ku muntu ufite `(Hereditary Spastic Paraplegia)`?

Ibi biterwa cyane n'uburemere bw'ibimenyetso . Nkuko twabivuze mbere, iyi ndwara ikomeza kwiyongera. Akenshi ibaho buhoro buhoro, mu gihe cy'imyaka myinshi . Ibi bishobora gutuma umuntu atakaza ubushobozi bwo kugenda buhoro buhoro, ndetse no gukenera ubufasha bwo kugenda.

Niba ufite ibindi bimenyetso by'imitsi, bishobora kugira ingaruka ku mibereho yawe . Abantu bafite ibi bibazo bashobora gukenera ubufasha n'ubufasha mu buzima bwabo bwose.

Ese Hereditary Spastic Paraplegia igabanya igihe cyo kubaho?

Ubusanzwe, iyi ndwara `(Hereditary Spastic Paraplegia)` ntabwo igira ingaruka ku mibereho yawe . Ariko, mu bwoko bumwe na bumwe bw'iyi ndwara bugoye, ibintu bishobora kuba bitandukanye gato. Umuntu mwiza wo kumenya kuri iyi ndwara ni umuganga wawe. Ashobora gusobanura icyo ushobora kwitega bitewe n'uburwayi bwawe.

Ese hari uburyo bwo kwirinda iyi ndwara?

Nta buryo buzwi bwo kwirinda Hereditary Spastic Paraplegia. Kubera ko ari indwara iterwa n'uturemangingo, niba ushaka kumenya ibyago byawe byo kurwara iyi ndwara n'izindi ndwara ziterwa n'uturemangingo, ushobora kuvugana n'umujyanama mu by'uturemangingo maze umenye ibijyanye no gupima uturemangingo .

Ni ryari ngomba kujya kwa muganga?

Niba usanzwe ufite ibi bimenyetso, niba bisa nkaho birushaho kwiyongera uko igihe kigenda gihita, cyangwa niba ugaragaje ibimenyetso bishya, menya neza ko ubimenyesheje muganga wawe. Ashobora guhindura gahunda yawe yo kuvura uko bikenewe no kugufasha guhangana n'iyi ndwara irushaho kuba mbi.

Ni ibihe bibazo ngomba kubaza muganga wanjye?

Iyo umenye ko wowe cyangwa undi muntu uzi afite `(Hereditary Spastic Paraplegia)`, ushobora kuba ufite ibibazo byinshi mu mutwe wawe. Urugero:

• Ni ubuhe bwoko bw'indwara yo kubura impumuro (spastic paraplegia) mfite?
• Ni ubuhe bwoko bw'ubuvuzi ungira inama yo kunkorera?
• Ese hari ingaruka mbi kuri ubu buryo bwo kuvura?
• Ese nzakenera gukoresha inkoni, igare ry'abagenda n'amaguru, cyangwa amagare y'abamugaye?
• Ni ibihe bikorwa nshobora gukora mu mutekano?

Ni ibisanzwe kumva uremerewe iyo umenye indwara nk'iyi. Ibibazo nka "Nayirwaye nte?", "Hari umuntu wo mu muryango wanjye uyirwaye?", "Ese ibimenyetso byanjye bizarushaho kwiyongera?" bishobora kuza mu mutwe. Ariko ntugahangayike. Muganga wawe azaba ari kumwe nawe muri uru rugendo kandi agusubize ibibazo byawe byose.

Ibi bimenyetso bishobora gutangira ku myaka iyo ari yo yose kandi bishobora kwiyongera buhoro buhoro uko igihe kigenda. Hari igihe n'imirimo yoroshye ya buri munsi, nko kugenda n'amatungo yawe cyangwa kugenda ku igare, ishobora kuba ingorabahizi. Hari ubwo gukora ibi bintu bishobora guteza akaga. Ushobora gukenera kwiga uburyo bushya bwo gukora ibintu bikunogeye umubiri wawe, cyangwa gufata umwanya w'inyongera wo gukora ibintu bishobora gufasha gukumira impanuka. Muganga wawe azaguha inama zijyanye nawe kugira ngo ukomeze kugira umutekano n'ubuzima bwiza.

## Ibintu by'ingenzi ugomba kwibuka (Ubutumwa bwo kujyana mu rugo)

Sawa, rero ndizera ko ubu ufite igitekerezo cyiza kuri `(Hereditary Spastic Paraplegia)` twaganiriyeho.

Igikuru ni ukujya kwa muganga niba ukeka ko ufite ibi bimenyetso. Iyo bigaragaye hakiri kare, hari uburyo bwo kuvura bushobora kugufasha kugenzura ibimenyetso no kugufasha kubaho ubuzima busanzwe uko bishoboka kose.

• Wibuke ko iyi atari ikosa ryawe . Iyi ni indwara iterwa n'uturemangingo.
• Nubwo kuvura bidashobora gukiza indwara burundu, ibimenyetso byayo birashoboka kubikemura .
• Ubuvuzi bw'umubiri n'ubuvuzi bw'akazi ni uburyo bubiri bw'ingenzi cyane bwo kuvura abantu babana n'iyi ndwara.
• Wite ku buzima bwawe bwo mu mutwe . Ntugatinye gusaba ubufasha niba ubukeneye.
• Ntabwo uri wenyine. Hari abaganga, abavuzi, n'abakunzi bawe muri uru rugendo hamwe nawe kugira ngo bagufashe.

Twizeye ko aya makuru azaba ingirakamaro kuri wewe. Komeza ugire ubuzima bwiza!

" Heditary Spastic Paraplegia", "Hereditary Spastic Paraplegia", "Healing strain", "Male strain", "Treatments of mental brains", "Negatives of Neurological", "Genetic Diseases", "Intamba"