Stiff Skin Syndrome (SSS) yog ib yam kab mob tsis tshua muaj neeg tsawg uas cuam tshuam rau menyuam yaus. SSS yog qhov tsawg heev uas qee tus kws tshawb fawb tsis txaus siab seb nws puas yog ib tus neeg muaj mob lossis muaj cov tsos mob cuam tshuam nrog qee yam kab mob. Nws feem ntau yog tus yam ntxwv los ntawm kev tsim cov tawv tawv tawv hla lub cev ntawm lub cev ua rau muaj kev txav mus los tsawg. Cov tsos mob feem ntau nce thoob plaws hauv menyuam yaus thiab tseem tuaj yeem ua rau tsis muaj peev xwm taug kev. Txhawm rau txhawm rau txheeb xyuas Cov tawv nqaij tawv tawv, koj yuav tsum muaj peev xwm paub txog cov tsos mob thiab nrhiav tswv yim kho mob tshaj lij. Yog tias koj tus menyuam tau kuaj mob nrog SSS, tswj cov tsos mob los ntawm kev kho lub cev.
Cov kauj ruam
Txoj Kev 1 ntawm 3: Paub Cov tsos mob
Kauj Ruam 1. Txheeb xyuas lub ntsej muag ntawm lub cev kom tawv nqaij tawv
Stiff Skin Syndrome yog tus yam ntxwv ntawm kev txhim kho tawv nqaij tawv. Qhov no feem ntau txhim kho thoob plaws lub cev ntawm cov menyuam yaus. Cov tsos mob yuav pib pom tam sim thaum yug los lossis qee lub sijhawm thaum tus menyuam lub neej, feem ntau ua ntej hnub nyoog rau xyoo. Feem ntau nws tsis txhim kho tom qab hluas.
Kauj Ruam 2. Kuaj kev sib koom tes thiab kev yoog raws
Kev tsim cov tawv nqaij tawv thiab tuab nyob thoob plaws lub cev feem ntau tuaj yeem ua ke nrog kev sib koom ua ke tsawg. Hauv qee kis cov pob qij txha tuaj yeem ua rau tawv heev uas lawv tau nyam hauv ib qho haujlwm tshwj xeeb thiab tsis tuaj yeem txav tau.
- Piv txwv li, caj npab tuaj yeem nyam hauv txoj hauj lwm khoov vim qhov txhaws ntawm lub luj tshib sib koom.
- Qhov no tseem tuaj yeem cuam tshuam lub cev yog tias tus nqaj qaum tau khoov.
Txoj Kev 2 ntawm 3: Kev Xeem rau Cov tawv nqaij tawv
Kauj Ruam 1. Tham nrog koj tus kws kho mob
Yog tias koj xav tias koj tus menyuam tab tom pom cov tsos mob cuam tshuam nrog Stiff Skin Syndrome, koj yuav tsum tham nrog koj tus kws kho mob. Qhov no yog qhov tsis tshua muaj caj ces tsis zoo thiab yuav tsum kuaj los ntawm kws kho mob. Txhawm rau txheeb xyuas kab mob caj ces, koj tus kws kho mob yuav tshuaj xyuas tsev neeg keeb kwm, cov tsos mob, ua qhov kev kuaj mob lub cev, thiab xaj kom kuaj sim.
Kauj Ruam 2. Ua qhov kev kuaj caj ces
Txhawm rau kuaj mob Stiff Skin Syndrome, cov neeg mob yuav tsum tau kuaj caj ces. Tus kab mob no tshwm sim los ntawm kev hloov pauv caj ces uas tiv thaiv kev txhim kho ntawm cov tawv nqaij ywj pheej uas pab cov tawv nqaij, ligaments, thiab cov hlab ntsha txav mus.
Txhawm rau ua kom tiav kev tshuaj ntsuam caj ces tus neeg mob yuav tsum muab cov qauv ntshav, plaub hau, tawv nqaij, lossis lwm cov ntaub so ntswg rau kev tshuaj ntsuam genetic
Kauj Ruam 3. Sau koj tsev neeg keeb kwm kev kho mob
Tsev neeg keeb kwm kev kho mob feem ntau tseem ceeb thaum kuaj mob kab mob. Sau cov ntaub ntawv hais txog koj tsev neeg keeb kwm kev kho mob. Piv txwv, muab cov ntaub ntawv qhia rau koj tus kws kho mob hais txog kev mob loj lossis kab mob uas tuaj yeem muaj nyob hauv koj tsev neeg. Sim thiab muab cov ntaub ntawv hais txog keeb kwm kev kho mob ntawm ntau tiam neeg.
Pib sau thiab sau koj tsev neeg keeb kwm hauv cov ntaub ntawv khaws tseg. Muaj cov ntawv online uas tuaj yeem pab koj sau koj li keeb kwm tsev neeg
Txoj Kev 3 ntawm 3: Tswj Cov tawv nqaij tawv tawv
Kauj Ruam 1. Sim kho lub cev
Txog rau hnub no tseem tsis tau paub kho rau Stiff Skin Syndrome, thiab hloov pauv cov neeg mob yuav tsum sim thiab tswj hwm lawv cov tsos mob. Ib qho ntawm cov tswv yim tswj hwm zoo tshaj plaws yog kho lub cev. Vim tias Stiff Skin Syndrome txwv tsis pub sib koom tes, kho lub cev siv los pab tswj lossis txawm txhim kho kev sib koom tes.
Cov kws kho mob lub cev yuav ua haujlwm muab cov neeg mob nrog ntau yam kev nthuav dav thiab lub zog ua haujlwm uas yuav tsom mus rau thaj tsam ntawm lub cev uas cuam tshuam ntau tshaj los ntawm tus kab mob
Kauj Ruam 2. Yuav cov khoom siv taug kev lossis lub rooj zaum muaj log
Nyob ntawm seb qhov mob hnyav npaum li cas, koj tus menyuam yuav muaj teeb meem txav mus los. Yog tias qhov no yog, koj tuaj yeem yuav cov khoom pab taug kev xws li pas nrig los pab nrog lawv kev txav chaw. Qee zaum cov pob qij txha tuaj yeem ua rau tawv heev uas taug kev mus tsis tau. Siv lub rooj zaum muaj log los pab nrog kev txav chaw.
Saib mus rau tsoomfwv cov kev xaiv nyiaj txiag rau kev pab kim, xws li lub rooj zaum muaj log
Kauj Ruam 3. Koom nrog pab pawg txhawb nqa
Muaj ntau pab pawg muaj kev pab rau cov neeg mob thiab cov neeg hauv tsev neeg kom tau ntsib lwm tus neeg uas muaj tus kab mob tsis tshua zoo ib yam. Cov pab pawg no tso cai rau tib neeg qhia lawv cov dab neeg thiab kev paub. Ntau ntawm cov pab pawg no tseem koom nrog hauv kev paub txog kev ua haujlwm, thiab sau cov ntaub ntawv rau cov neeg mob.
Sim hu rau ib qho ntawm cov hauv paus no txhawm rau nrhiav pab pawg: Cov Menyuam Cov Kab Mob Ntawm Daim tawv nqaij, National Marfan Foundation, Scleroderma Research Foundation
Kauj Ruam 4. Koom nrog hauv kev sim tshuaj
Stiff Skin Syndrome yog ib yam kab mob tsawg heev thiab cov kws kho mob tseem tab tom nrhiav txoj hauv kev los tswj thiab kho tus kab mob. Yog li ntawd, tej zaum yuav muaj sijhawm los koom nrog hauv kev sim tshuaj. Txheeb xyuas lub vev xaib clinicaltrials.gov kom paub ntau ntxiv txog kev koom nrog hauv kev sim tshuaj.
