Prader-Willi Syndrome (PWS) yog kab mob tsis zoo uas tau kuaj pom thaum menyuam yaus thaum ntxov. Nws cuam tshuam kev txhim kho ntawm ntau qhov ntawm lub cev, ua rau muaj teeb meem tus cwj pwm, thiab qee zaum ua rau rog dhau. PWS tau kuaj pom los ntawm cov tsos mob thiab kuaj caj ces. Kawm paub yuav qhia li cas yog tias koj tus menyuam muaj PWS yog li koj tuaj yeem tau txais koj tus menyuam txoj kev kho mob uas lawv xav tau.
Cov kauj ruam
Ntu 1 ntawm 3: Txheeb Xyuas Cov tsos mob tseem ceeb
Kauj Ruam 1. Saib cov leeg tsis muaj zog
Ib qho tsos mob tseem ceeb ntawm Prader-Willi Syndrome yog cov leeg tsis muaj zog thiab tsis muaj cov leeg nqaij. Cov leeg tsis muaj zog feem ntau pom tau zoo hauv thaj tsam ntawm lub cev. Tus menyuam kuj tseem tuaj yeem muaj qhov muag tsis pom lossis lub cev tsis zoo. Tus menyuam kuj tseem yuav muaj lub suab quaj lossis muag muag.
Qhov no feem ntau tshwm sim thaum yug los lossis tom qab yug los. Qhov floppiness lossis cov leeg tsis muaj zog yuav zoo dua lossis ploj mus tom qab ob peb hlis
Kauj Ruam 2. Txheeb xyuas cov teeb meem pub mis
Lwm qhov teeb meem tshwm sim rau menyuam yaus nrog PWS yog kev pub zaub mov nyuaj. Tus menyuam yuav tsis muaj peev xwm nqus tau zoo, yog li lawv yuav xav tau kev pab los pub mis. Vim yog qhov nyuaj rau kev pub mis, tus menyuam muaj kev loj hlob qeeb lossis tsis loj hlob.
- Tej zaum koj yuav tsum tau siv kev siv cov raj pub mis lossis yuav cov txiv mis tshwj xeeb los pab tus menyuam nqus kom raug.
- Qhov no feem ntau ua rau nyuaj rau tus menyuam mos kom vam meej.
- Cov teeb meem nqus no tuaj yeem txhim kho tom qab ob peb lub hlis.
Kauj Ruam 3. Saib xyuas kom hnyav nce sai
Raws li menyuam yaus hnub nyoog, lawv yuav ntsib kev hnyav hnyav hnyav ntxiv. Qhov no feem ntau yog vim muaj teeb meem nrog lub caj pas pituitary thiab teeb meem hormonal. Tus menyuam tuaj yeem noj ntau dhau, tshaib plab txhua lub sijhawm, lossis muaj kev xav noj zaub mov, uas ntxiv rau qhov hnyav nce.
- Qhov no feem ntau tshwm sim nruab nrab ntawm hnub nyoog ib thiab rau.
- Tus menyuam tej zaum yuav raug cais ua rog.
Kauj Ruam 4. Tshawb xyuas lub ntsej muag txawv txav
Lwm cov tsos mob ntawm PWS yog lub ntsej muag txawv txav. Qhov no suav nrog qhov muag zoo li lub ntsej muag, daim di ncauj sab saud, nqaim ntawm cov tuam tsev, thiab nqes los ntawm lub qhov ncauj. Tus menyuam kuj tseem muaj qhov ntswg ntxeev.
Kauj Ruam 5. Saib rau ncua kev loj hlob ntawm qhov chaw mos
Lwm qhov kev txhim kho ntawm PWS yog ncua kev txhim kho ntawm cov kabmob sib deev. Feem ntau cov menyuam uas muaj PWS muaj qhov ua rau lub cev tsis zoo, uas txhais tau tias lawv muaj cov qes qis lossis lub zes qe menyuam tsis zoo. Qhov no ua rau txo qis kev txhim kho ntawm lawv qhov chaw mos.
- Hauv poj niam, lawv yuav muaj qhov ncauj me me txawv txav ntawm qhov ncauj thiab qhov chaw mos. Hauv cov txiv neej, lawv yuav muaj qhov hnoos me me los yog chaw mos.
- Tej zaum lawv yuav ncua lossis tsis tiav nkauj tiav nraug.
- Qhov no kuj tuaj yeem ua rau muaj menyuam tsis taus.
Kauj Ruam 6. Saib xyuas kev txhim kho qeeb
Cov menyuam uas muaj PWS tuaj yeem pom cov cim ntawm kev txhim kho qeeb. Qhov no tej zaum yuav yog ib qho me me lossis xiam oos qhab kev txawj ntse, lossis tus menyuam yuav muaj kev xiam oob khab hauv kev kawm. Lawv yuav tsis ua txoj haujlwm kev txhim kho lub cev kom txog thaum ntau tom qab, xws li zaum lossis taug kev.
- Tus menyuam tuaj yeem xeem ntawm IQ ntawm 50 txog 70.
- Cov menyuam yaus yuav muaj teeb meem nrog kev txhim kho kev hais lus.
Ntu 2 ntawm 3: Paub Txog Cov Cim Me Me
Kauj Ruam 1. Txheeb xyuas qhov txav qis
Txo kev txav mus los yog cov tsos mob me me ntawm PWS. Qhov no yuav tshwm sim thaum cev xeeb tub. Tus menyuam hauv plab yuav tsis txav lossis ncaws hauv plab ntau npaum li ib txwm muaj. Tom qab tus menyuam yug los, nws lossis nws yuav ua rau lub cev tsis muaj zog lossis qaug zog heev, uas tuaj yeem cuam tshuam nrog kev quaj tsis muaj zog.
Kauj Ruam 2. Saib rau cov teeb meem pw tsaug zog
Yog tus menyuam muaj PWS, lawv yuav muaj teeb meem pw. Tej zaum lawv yuav tsaug zog heev thaum nruab hnub. Lawv kuj tseem yuav tsis tsaug zog tag hmo, tab sis muaj kev cuam tshuam thaum tsaug zog.
Tus menyuam yuav tsaug zog tsaug zog
Kauj Ruam 3. Saib xyuas teeb meem tus cwj pwm
Cov menyuam yaus nrog Prader-Willi Syndrome tuaj yeem nthuav tawm ntau qhov teeb meem ntawm tus cwj pwm. Lawv tuaj yeem ua rau npau npau npau npau npau npau lossis ua rau tawv ncauj ntau dua li lwm cov menyuam. Lawv tuaj yeem koom nrog dag lossis nyiag, uas feem ntau cuam tshuam nrog zaub mov.
Cov menyuam yaus kuj tseem tuaj yeem pom cov tsos mob cuam tshuam nrog kev tsis meej pem yuam kev, thiab tseem koom nrog hauv kev ua xws li khaws tawv nqaij
Kauj Ruam 4. Nrhiav cov tsos mob me me
Muaj qee qhov tsos mob ntawm lub cev uas yog cov txheej txheem me uas pab kws kho mob kuaj pom PWS. Cov menyuam uas muaj qhov tsis ncaj ncees, lub teeb, lossis cov plaub hau daj, tawv nqaij, lossis qhov muag muaj kev pheej hmoo ntau dua. Cov menyuam yaus tuaj yeem hla qhov muag lossis tsis pom kev.
- Tus menyuam kuj tseem tuaj yeem qhia qhov txawv txav ntawm lub cev, xws li txhais tes thiab ko taw me me lossis nqaim. Lawv kuj tseem tuaj yeem luv luv rau lawv lub hnub nyoog.
- Cov menyuam yaus tuaj yeem muaj qaub ncaug los yog nplaum ntau heev.
Kauj Ruam 5. Txheeb xyuas lwm yam tsos mob
Lwm yam tsos mob tsawg dua tuaj yeem tshwm sim rau menyuam yaus nrog Prader-Willi Syndrome. Qhov no suav nrog qhov tsis muaj peev xwm ntuav thiab qhov siab rau qhov mob. Tej zaum lawv yuav muaj teeb meem nrog lawv cov pob txha, xws li scoliosis (curvature of the spine) lossis osteoporosis (pob txha nkig).
Lawv kuj tseem tuaj yeem muaj menyuam yaus thaum ntxov vim tias ua haujlwm tsis zoo hauv cov qog adrenal
Ntu 3 ntawm 3: Nrhiav Kev Pab Kho Mob
Kauj Ruam 1. Paub thaum twg thiaj nrhiav kev pab kho mob
Cov kws kho mob siv cov txheej txheem tseem ceeb thiab me me los txiav txim siab yog tias Prader-Willi Syndrome yog qhov ua tau rau koj tus menyuam. Nrhiav cov tsos mob no tuaj yeem pab koj txiav txim siab yog tias koj tus menyuam yuav tsum raug kuaj lossis kuaj los ntawm kws kho mob.
- Rau menyuam yaus ob thiab qis dua, tag nrho tsib lub ntsiab lus xav tau los sim. Peb mus rau plaub lub ntsiab lus yuav tsum yog los ntawm cov tsos mob tseem ceeb, nrog rau lwm tus los ntawm cov tsos mob me.
- Cov menyuam yaus peb xyoos thiab tshaj saud yuav tsum tau qhab nia yam tsawg yim. Plaub txog tsib lub ntsiab lus yuav tsum yog los ntawm cov tsos mob loj.
Kauj Ruam 2. Coj koj tus menyuam mus rau kws kho mob
Ib txoj hauv kev zoo kom koj tus menyuam kuaj mob rau Prader-Willi Syndrome thaum ntxov yog coj lawv mus rau lawv qhov kev kuaj mob tom qab lawv yug los. Tus kws kho mob tuaj yeem taug qab lawv txoj kev txhim kho thiab pib pom muaj teeb meem. Hauv ib qho ntawm kev mus ntsib koj tus menyuam thaum ntxov, tus kws kho mob tuaj yeem siv cov tsos mob pom thaum lub sijhawm kuaj mob txhawm rau txheeb xyuas PWS.
- Hauv cov sijhawm teem tseg no, tus kws kho mob tshuaj xyuas tus menyuam txoj kev loj hlob, qhov hnyav, cov leeg nqaij thiab txav mus los, qhov chaw mos, thiab taub hau ib ncig. Tus kws kho mob tseem niaj hnub saib xyuas tus menyuam txoj kev loj hlob.
- Koj yuav tsum qhia tus kws kho mob yog tias koj tus menyuam muaj teeb meem noj zaub mov lossis nqus dej, yog tias muaj teeb meem pw tsaug zog, lossis yog lawv zoo li lawv muaj lub zog tsawg dua li qhov lawv xav tau.
- Yog tias koj tus menyuam loj dua, qhia rau koj tus kws kho mob txog kev noj zaub mov tsis zoo lossis tus cwj pwm noj ntau dhau uas koj pom hauv koj tus menyuam.
Kauj Ruam 3. Tau txais kev sim tshuaj
Yog tias tus kws kho mob xav tias PWS, lawv yuav kuaj ntshav kuaj ntshav. Qhov kev kuaj ntshav no yuav paub tseeb tias koj tus menyuam muaj PWS. Qhov kev ntsuam xyuas yuav tshuaj xyuas qhov txawv txav ntawm cov chromosome 15. Yog tias muaj keeb kwm txog PWS hauv koj tsev neeg, koj tseem tuaj yeem kuaj ua ntej cev xeeb tub los kuaj koj tus menyuam rau PWS.
