Tebirkiloz

Dr. Memet Emin

Tebirkiloz (TB) bolsa tebirkiloz bakteryesi bilen yuqumlunush arqilqi peyda bolghan yuqumluq kisel bolup, adette eng kop uchuraydighan organ opke bolsimu, biraq bedenning her qaysi organlirida ayrim halda we yaki birla waqitta mewjut bolush ihtimalliqi bar.

Tebirkiloz Uyghurlar ichide eng  kop uchuraydighan kisellerning biri bolup, bu kiselni dawalash usuli jehette putun dunya miqyasida chong periq yoq, hem shundaqla hazir qoliniwatqan dawalash usuli we dawalashta ishlitilidighan dorilarmu asasen qiliplashqan yaki formulalashqan. Bu kisel Uyghurlar arisida kop uchurghanlighi uchun Uyghur ilidiki doxturlarning bu kiselni dawalashtiki tejirbiliri xilila mukemmel. Undin bashqa tebirkiloz meyli qaysi organ we ezada bolushtin qetti nezer, dawalash usili asasen oxshash. Adette 3 xildin 4 xilghiche Tebirkilozgha qarshi dorini birleshturup kem digende 6 aydin 9 ay ishletse bolidu. Ayrim ehwalda yaki beden berdashliq bireligen ehwalda eng yaxshisi 1 yildin 1.5 yil ishletish kirek. Bundaq qilghanda kiselni uzul kisil saqayitqili we kiyin yene qayta qozghulush ihtimalini towenlitishke bolidu. Tebirkilozni dawalashta ishlitilidighan dorilarning ekis tesiri kushluk bolup, bedendiki nurghun organ we ezalargha bolupmu jigerge kop ziyini bar, biraq tebirkilozni dalashta bu dorilarni ishletmey amal yoq. Shunga dawalash jeryanda jigerni qoghdash dorilirini qoshumche qilip ishlitish bilen birge her bir ayda hich bolmighan her uch ayda bir qitim jigerni tekshurtup turush kirek.

Teng mewjut bolush ihtimali bolghan kisellikler, we kiyin kilip chiqish ixtimali bolghan egeshme kisellikler we yaman aqiwetler

1. Opke tebirkilozi (肺结核)
2. Limfa tugunchiliri Tebirkilozi (淋巴结结核)
3. Tebirkilozluq Qosaq Perde Yallughi (结核性腹膜炎，腹膜腔结核)
4. Kokrek perdisining chapliship qilishi (胸膜粘连)
5. Qosaq perdisining chapliship qilishi (腹膜粘连)
6. Qosaq towen qismi tebirkilozi (结核性盆腔炎，盆腔结核 )
7. Uchey Tebirkilozi (肠结核)

Tebirkilozi dawalashta ishlitidighan dorilar
Isoniazid (INH)  异烟肼
Rifampin 利福平
Pyrazinamide  吡嗪酰胺
Ethambutol  乙胺丁醇
Streptomycin  链霉素

Tebirkilozi dawalashta towendikilerge alahide diqet qilish kirek
1. Amal bolsa tebirkilozi dorisini 1 yildin 1.5 yil, hich bolmighanda 9 ay ishlitishi kirek.
2. Ozuqluq kucheytilishi kirek. Amal bar quwetlik tamaqlarni istimal qilish kirek.
3. Yaxshi aram ilish, bek hirip charchashtin saqlinish kirek.
4. Muhapiq herket qilip, beden chiniqturushnimu birge ilip birish kirek.
5. Birle waqitta bashqa kiseller bolsa, unimu qoshup dawalash ilip birirsh kirek.

Qan Bisimi

Yuquri Qan Bisimi (Hypertension)

Dr. Memet Emin

Qan bisimi we Yuquri qan bisimi

Qan bisimi (blood pressure) diginimiz yurekning soqushi arqiliq yurektin chiqip, qan tomurda iqiwatqan qanning qan tomur timigha chushurgen bisimidin ibaret.

Qan bisimi adette 2 san bilen ipadilinidighan bolup, biri yurek siqilghan waqittiki qanning qan tomurgha kelturgen bisimi bolup, bu yuquri bisimi yaki yurek siqilghandiki bisim (systolic pressure, 收缩压) hisaplinidu, normalda 90 din 120 mmHg (yeni millimiter simap, bir xil bisim birliki)  ariliqida bolidu; yene biri bolsa yurek kengeygendiki qanning qan tomur timigha chushurgen bisimi bolup, bu towen bisim yaki yurek kengeygendiki bisim (diastolic pressure, 舒张压) hisaplinidu; normalda 60 din 80 mmHg ariliqida bolidu.

Normal qan bisimi 90/60 mmHg bilen 120/80 mmHg ariliqida bolidu. Eger qan bisimi 140/90 mmHg we uningdin yuquri bolsa yuquri qan bisimi (hypertension, high blood pressure) hisaplinidu. Eger qan bisimi 120/80 mmHg bilen 140/ 90 mmHg ariliqda bolsa, yuquri qan bisimining chigirisida (prehypertension) bolghan hisaplinidu.

Eger qan bisimi yuquri qan bisimining chigirsida bolghan bolsa, yashning chongiyishigha egiship yuquri qan bisimigha tereqqi qilishning ihtimalliqi yuqurlap mangidu.

Yuquri qan bisimini kelturup chiqiridighan xeterlik amillar

Towendiki amillar qan bisimigha tesir korsutishi mumkin
• Bedendi suyuqluq we tuz madisining miqdari
• Borek, nirwa sistimi we qan tomurning ehwali
• Bedendiki oxshimighan hormunlar

Yashning chongiyishigha egiship qan bisimi yuqurlap mangidu, buning asasliq sewebi yashning chongiyishigha egiship qan tomur timi qitiship, uning ilastikiliq towenligenligidindur. Adem yuquri qan bisimigha giriptar bolghanda, minge qan tomur kisili (stroke, 中风, 脑血管意外), yurek qan tomur kisili we yaki yurek tiqilmisi (heart attack, 心脏病发作), yurek zeyipligi (heart failure, 心力衰竭) we burek kisili qatarliq kisellerge giriptar bolush ihtimalliqi iship baridu.

Towendiki ehwallar bolghanlarning, yuquri qan bisimigha ige bolush ihtimalliqi iship baridu.
• Simiz bolghanlar we yaki beden eghirliqi yuquri bolghanlar;
• Dawamliq jiddilishidighan we yaki endishe qilidighanlar;
• Gosh we mayliq yimekliklerni kop istimal qilidighanlar
• Kop haraq ichsishke adetlengenler;
• Tuzni kop istimal qilishqa, yeni hemme nersige tuz silip yiyishke adetlengenler.
• Ahiliside yuquri qan bisimigha giriptar bolghanlar;
• Herketni az qilidighan we yaki beden chiniqturushqa akitip qatnashmaydighanlar;
• Qandiki may (血脂) we kolestirol (胆固醇) madisi yuquri bolghanlar;
• Diyabit (shiker siyish) kisilige giriptar bolghan bolghanlar;
• Uzun mudette tamaka chekkenler;

Eger qan bisimining yuquri bolushini kelturup chiqarghan hichqandaq sewep bolmisa, yaki sewebi iniq bolmisa, we yaki qan bisimi yuquri bolushtin bashqan hichqanda normalsizliq bolmighanda, bu xil yuquri qan bisimi birlemchi yuquri qan bisimi (essential hypertension) hisaplinidu.

Eger yuquri qan bisimi bashqa kisellik we ehwallar sewebidin kilip chiqqan bolsa, bu xildiki yuquri qan bisimi ikkilemchi yuquri qan bisimi (secondary hypertension) hisaplinidu.

Ikkilemchi yuquri qan bisimi (secondary hypertension) bilen munasiwetlik ehwallar
• Asta xaraktirlik borek kisili (chronic kidney disease)
• Borek usti bizidiki normalsizliq
• Eghir ayaq bolush
• Bezi dorilarning ekis tesiri tupeylidin
• Qan tomurning tariwilishi bolupmu borek qizil qan tomurining tariwilishi
• Qalqansiman bizi yandash bizining iqtidari iship ketkende (hyperparathyroidism)

Yuquri qan bisimining kisellik alametliri

Yuquri qan bisimi asta xaraktirlik kisel bolup, kishilerning qan bisimining normaldin yuquri qan bisimigha tereqqi qilish jeryani asta xaraktirliq uzun bir jeryan bolghini uchun, kopunchi ehwalda hichqandaq alahide kisellik alamiti bolmaydu. Yuquri qan bisimigha giriptar bolghan kopunche kishiler ozining yuquri qan bisimini saghlamliq tekshurgende tasadipi bayqaydu.

Eghir derijidiki yuquri qan bisimigha giriptar bolghan kishilerde bash qattiq aghirish, yandurush we qusush, bash qiyish, kozi torlushush, burni qanash qatarliq alametler korulidighan bolup, bu xildiki yuquri qan bisimini yaman supetlik yuquri qan bisimi (malignant hypertension) hisaplinidu.

Dawalash

Yuquri qan bisimini dawalashning mehsiti qan bisimini towenlitip yuquri qan bisimi kelturup chiqiridighan egeshme kiselliklerdin saqlinishtin ibaret. Yeni yuquri qan bisimini bir qitimdila dawalap saqayitqili bolmaydu, peqet qan bisimini towenlitidighan dorilarni uzluksiz ishlitish arqiliq yuquri qan bisimini towenlitip normal dahirde konturul qilighili bolidu.

Eger qan bisimi yuquri qan bisimining chigirsida bolsa, turmush adetni ozgertish ariqiliq, qan bisimining dawamliq yuqurlap birishidin saqlanghili we uni normal dahirge chushurushke tamamen bolidu. Eger turmush aditini ozgertish arqiliq qan bisimini yaxshi konturul qilghanda, adette qan bisimni towenlitidighan dorilarni ishlitishning hajiti yoq.

Towendikiler arqiliq qan bisimini yaxshi konturul qilghili bolidu
• Saghlam yimekliklerni istimal qilish, yeni usuzlukni kop ichish, tala (fiber) terkiwi kop yimekliklerni sitimal qilish; mayliq yimekliklerni istimal qilishni konturul qilish arqiliq;
• Dawamliq beden chinishturush, yeni kunige kem digende yirim saet chiniqish arqiliq;
• Eger tamaka chikidighanlar bolsa, tamakini tashlash arqiliq;
• Haraqning miqdarini konturul qilish, yene kop haraq ichmeslik arqliq;
• Yimek ichmek terkiwidiki tuz miqdarini azaytish, yeni kunduluk istimal qilidighan tuzning  midarini 1.5 giramning toweynide konturul qilish arqiliq.
• Beden eghirliqini chushurush we yaki muhapiq oruqlash arqiliq;
• Qandiki kolesturulni towenlitish arqiliq;
• Jiddilishish we dawamliq endishe qilishtin saqlinish, keypiyatni tengshep, artuqche achchiqlinishtin saqlinish arqiliq;

Eger qan bisimi yuquri qan bisim chigirsidin halqip resmi yuquri qan bisimigha yetken bolsa, eng yaxshisi qan bisimini towenlitidighan bir we bir nechche dorilarni birge istimal qilish arqiliq, qan bisimini uzluksiz normal dahirde konturul qilish kirek. Kopunchi ehwalda turmush aditini ozgertish we qan bisimini towenlitidighan dorlar arqiliq qan bisimini normal konturul qilishqa bolidu.

Eger yuquri qan bisimi ikkilemchi yuquri qan bisimi bolsa, yeni yuquri qan bisimi bashqa kiseller tupeylidin kilip chiqqan bolsa, eng muhimi u kisellerni birge dawalitish kirek. Eger yuquri qan bisimi eghir ayaq bolush sewebidin kilip chiqqan bolsa, yenggigendin kiyin qan bisimi normalgha chushidu. Eger normalgha chushmise u chaghda yuquri qan bisimigha oxshash muhamile qilishqa toghura kilidu.

Yuquri qan bisimining egeshme kisellikliri

• Bedenning muhim ezliridiki qizil qan tomuri yirilip, u ichki azalarda qan chiqishni kelturup chiqirish;
• Asta xaraktirlik borek kisili (chronic kidney disease)
• Yurek tiqilmisi (heart attach) we yurek zeyipliki (heart failure)
• Bedendiki bezi muhim ezalargha qan yitishmeslik
• Minge qan tomur kisili (stroke), yeni mingige qan chushush;
• Kozning korush quwiti ajizlap kitish, we qarghu bolup qilish;

Yuquri qan bisimining aldini ilish

• 18 yashtin artuq balaghetke yetkenler qan bisimini olchutup turush kirek;
• Turmush aditini ozgertish kirek;
• Saghlam yimekliklerni istimal qilishqa, yeni usuzlukni kop ichishke, tala (fiber, 纤维素) terkiwi kop yimekliklerni istimal qilishqa, mayliq yimekliklerni istimal qilishni konturul qilishqa adetlinish kirek;
• Dawamliq beden chinishturush, yeni kunige kem digende yirim saettin artuq chiniqishni usluksiz dawamlashturush kirek;
• Tamaka chikidighanlar tamakini tashlishi kirek;
• Kop haraq ichmeslik kirek;
• Yimek ichmek terkiwidiki tuz miqdarini azaytish, yeni kunduluk istimal qilidighan tuzning  midarini 1.5 giramning toweynide konturul qilish kirek.
• Beden eghirliqini yaxshi konturul qilish, semirip kitishning aldini ilish kirek;
• Qandiki may we kolesturulni normal dahirde konturul qilish kirek;
• Jiddilishish we dawamliq endishe qilishtin saqlinish, keypiyatni tengshep, asan artuqche achchiqlinishtin saqlinish kirek;

Hayatliq yolida

2007-yili yil bishida ozige "Duchenne Muscular Dystrophy" dep atilidghan bir irsi kiselge giriptar bolghanliq diyagunuzi qoyulghan bir qiz ozi giriptar bolghan u kisel toghursida men bilen alaqe qilghan idi. Men towende u qiz bilen yizishqan xetni retlep oqurmenlerning paydilinishi uchun sundum.

Hayatliq yolida


“Saghlamliq”, saghlam tughulup, saghlam osup yitilgen we saghlam yashawatqan her bir insangha nisbeten adettiki bir soz we eng addi bir uqum, biraq miyip tughulup qalghanlargha, osup yitilish jeryanida nurghun kiselliklerni bishidin kechurgenlerge, saqaymas we yaki asta xaraktirlik sorelme kisellerge giriptar bolup uzun yil kisellik azawini tartqanlargha nisbeten, dunyada “Saghlamliq”tin qimmetlik we eziz nerse bolmisa kirek. Shunga beziler “Saghlamliq bahasiz goher. Saghlamliq insane hayatidiki eng chong bayliq”dep toghura eyitqan iken.

2007-yili 1-ayning 27-kuni, men namelum birsidin bir parche xet tapshurup aldim. Xet wetende saqaymas kiselge giriptar bolghan bir Uyghur qizdin kelgen bolup, mini yardemde bolup qalarmikin digen umutte yazghan iken. Xetning mezmuni towendikiche.

Assalamualaykum!

Memet Emin aka, siz we ahilingizdiki hemminglar tinich-aman turdunglarmu?

Natonush birdin kelgen hetke balkim ejepliniwatqansiz. Sizdin bazi muhim ishlar hakkida maslihat elish shundakla yardimingizga ehtiyajlik bolup bu hatni tolimu hijalet ichida yeziwatiman. Siz Amerikida ham Engiliz tiliga puhta ham bir meditsina dohturi bolgingiz uchun manga yardam kilamigan halattimu maslihat beralar degan umidtiman.

Sozumni uzartmay udulla dewirey: Ehtimal siz (Duchenne Muscular Dystrophy ----Engilizcha kiskartilmisi -- (DMD) degan bu kesal hakkida sizning kasip dairingizda bolmigini uchun kop bilmaydigansiz. Agar tordin izdap baksingizla bu kesalning kandak kesal ikanlikini tapsiliy biliwalaysiz. Man we mening ikki singlim dal shu kesalga girptar bolup kalduk. Man 24 yashka kirdim, singllirim 20 we 15 yashta. garcha kichik singlimning kesili amdilatin bashlangan bolsimu lekin amaliy ahwal uningmu bizga ohshash bolup kelishi mumkinligini korsitip turuptu.

Siz Xinjangning -- Jungoning meditsina sawiyisining kanchilik ikanligini obdan bilisiz. Biz kanche kilipmu bu kesalni Jungoda dawalap sakaytish imkaniyiti tapalmiduk, lekin man halkara tor batlirida izdash arkilikmu shuni hes kildimki bu kesal putun dunyada tehi sakaytish imkaniyiti yok kesal ikan. Man yekinda Italiya dohturlining bu hakta azrak natija hasil kilganlikini bilip ular bilan E-mail arkilik alake kildim. Amma ular kilgan sinak tehi amdi haywanatlar ustida elip berilganlikini, garche muwappikiyatlik bolgan bolsimu, adamlar tenida sinak kilishka tehi bir nahchche yil barlikini eytti.

Biraylan manga hazirki ang yahshi usul amal kilip kesalning tehimu egirlap ketishining aldini elish, Girmaniyida (Royal cells inistituti)ning Nektar "T" degan dorini ishlap chikarganlikini, dora uniminging yahshi ikanligini eytip bardi. Man ularga hat yazdim, ular jawap hat yazdi. Ularning tonushturghinigha kariganda dora unimi hakikatan kesalni tiginlashta yahsi roli bar ikan. Amma peket 7 kunlukla dorini haksiz taminlaydikan. Keyin setiwelish kerakkan. Bir aylik dora 85 yawro--850 yuen jungo puliga togra kelidikan. Man ikkilinip kaldim dora ham kimmat ham tehi ularning degan gepi ishanchlikmu amaes uni bilmaymiz. Pakat bu E-maildiki we ularning tor betidiki uchurlar halas.

Men torda Amerika (Ohio shitati) da u yardiki dohturhana we bazi tatkikat orunlirining bu kesal hakkida elip bargan dawalash usulinimu kordum. Amma ular maglup boptu. Amma bu 2000-yilidiki ishlar ikan. Yahoo torida izdisa bu uchurlar bar, balkim Amerikining bashka jaylirida yahshirak dawalash orunliri bardur yaki kesalni tizganlaydigan dorilar bardur. Engiliz tili sewiyam anche yahsi emes, uning ustiga tibby Engiliz tilidiki atalgular bak kiyin, chushinishmu tas ikan. Bir yahshi niyatlik kerindishimiz sizdin maslihat ilip bekishimni, sizni chokum yahshi maslihat beridu dap karaydiganlikini eytti. Siz bak aldirashtursiz, sizni awre kilip koyushumni biliman. Lekin manmu amalsiz kaldim. Siz bu hakte uchur izlap baksingizla bu keslaning bakmu yaman kesal ikanlikini bilisiz, bizning 3 kiz bir ahilide mushundak kesal bop kalgini bak echinarlik ahwal, bu kiselge dawamu hazircha tepilmaywatidu. Shundaktimu bu pakat wakit maslisi, birnachcha yilgicha chokum toluk dawalash imkaniyiti tepilidu dap karayman. Lekin shu kemgicha kesalni tizginlap turmisa olup ketish hawpi zor.

Tunji hetimdila kop sozlap kattim, tapsilyrek chushandurushum kerak dap oylidim, siz malal kormisinigz mumkin bolsa shu yarlik kasipdashlirinigz yaki uchur wastilri arkilik bu hakta uchurlarni igilap berishingizni, yol korsitishinigzni bakmu umit kiliman.

Chushanmigan yaki siz bilishni halaydigan ishlar bolsa sorinigz bolidu. Imkaniyat bolsila yardam kolingizni sunsingizkan.

Men u qizgha jawaben towendi xetni yolludum

Singlim,

Aldi bilen sizge, singlingizge we putun bir ahilige kelgen bu behitsizlikke chongqur hisidashliqimni bildurimen. Siz bu kisel toghursida kop izdinipsiz we hili toluq chushenchige ige bolghandek qilisiz. Siz digendek bu kisel hazirche saqaytish bir az qiyin bolghan kisellerning biri bolup, Amirkining ozidila 250 mingi bar iken.

Men bu kisel toghursida  bir izdinip baqay. Eger birer yingi uchurgha irishelisem, sizge xewer qilimen.

2007-yili 1-yaning 28-kuni u qizgha yazghan xitimgha jawaben towendiki xetni yollaptu.

Memet Emin aka, sizning jawap kayturgingizdin tolimu minnaddar boldum. Kimmatlik waktingizni ajritip kop aware bopsiz. Kop rehmat.

Kesalni kechikturush roli bar dorilarni Amerikidin tapkili bolarmikin bilmidim. Girmaniyadikilarning uchuriga kariganda heli unimi bardek amma man ishanch kilammaywatiman ham dorimu kop kimmat ikan. Iktisad maslisiggu muhim emes, birak gap dora unumining ular degandakmu yaki sahta tashwikatmu ? ikkilinip kaldim. bolsa bosh wakitliringizda karap bakkan bolsingiz.

Saglam tandin zor baylik yokkan adamge. Alla nesip kilsa bizmu bu kesaldin bir kuni halas bolarmiz. ishkilip tiriship bakiman ahirigicha. garche yuz korushmigan bolsakmu amma silardek chetallerdiki kerindashlirimizning biz uchun kilip beriwatkan ishliringlarga tolimu minnaddarmiz. Uygur bolginimdin rastinla pahirliniman. chunki bizda silarga ohshash oz halkini tashliwatmaydigan, ular uchun kan-tar tokup, zidinidigan esil parzantliri bar.

Men bu xetni tapshurup alghandin kiyin, bu jehette her terplime izdinish uchun, tordin bezi uchurlarni izdim, hem Harvard Universitidiki Qeyser Mijit bilen alqe qildim. Qeyser Mijit Harvard Universitidiki munasiwetlik mutexisler bilen alaqe qilghan iken. Ulardin towendikidek jawap keldi.

Thank you for contacting Dr. Louis Kunkel about information on Duchenne Muscular Dystrophy (DMD). My name is Elicia Estrella and I am the genetic counselor that works with Dr. Kunkel's research lab. I am sorry to hear that one family having 3 affected children. My first question would be how the diagnosis was made in this family. DMD affects mainly boys. It is very rare and unusual for a girl to be affected, so to have 3 daughter is one family is extremely rare and unusual. With that said there are other types of muscular dystrophy that affect both boys and girls equally. Unfortunately, there is no cure for most types of muscular dystrophy. There are medications that may help, but without knowing exactly how and what the family is diagnosed with I could not recommend anything. My best advice would be to contact the Muscular Dystrophy Association (MDA), they keep apprised of all new research and treatments.
Alternatively, we do research on families with different types of muscular dystrophy and would be happy to enroll your friend's in our study family if any of the girls has had a muscle biopsy. I have attached an informational brochure about the research that Dr. Kunkel does in his lab at Children's Hospital Boston. If your friend would like to come to Boston to have his children evaluated, I could arrange an appointment with Dr. Basil Darras, the neurologist that runs the MDA neuromuscular clinic here at Children's Hospital Boston. Good luck to you and that family. Feel free to contact me with any questions or if you are interested in our research.
Sincerely, Elicia Estrella, MS, CGC
Program in Genomics/Harvard Neuromuscular Disease Project Childrens Hospital

Bu xette bu kiselning asasliqi oghul balilarda korilidighanlighini, shunga u qizgha qoyulghan diyagunuzning nimige asasen qoyulghanlighini, eger amal bolsa u bimarning Bostungha kilishini deptu.

Shuning bilen men bu xet bilen qoshup u qizgha towendidek jawap qayturdum.

Singlim,

Sizning kisilingiz uchun Harvard University, Genomics/Neuromuscular Disease Project bilen shughuliniwatqanlar bilen alaqilashqan, ularning eytishiche, hem shundaqla men igelligen matiryallardimu bu kisel asasliqi oghul balida bolidiken. Shunga hazir bilmekchi bolghan mesile sizning kisilingizning bu kisel ikenligige qandaq diyagunuz qoyulghan, diyagunuzda xataliq barmu qoq? Mushu jehette tepsile bu uchur bilen teminlisingiz.

Men yuqarqi xetni ewetkendin kiyin 2007-yili 1-ayning 31-kuni u qizdin towendikidek jawap keldi.

Siz eytakandak yene biraylanmu bu hil kesallik oghullarda kop uchraydiganligini eytakan idi, lekin man kesip eytimanki bu chokum shundak kesal. 2005-yili yazda Aptonom rayonluk halik dohturhanisidiki bir dohtur bizga kongul bolup, ozining Amerikidin Jungogha sayahetka kalgan bir Amerikilik dohtur tonushini oyimizga elip kalgan idi. U korupmu mushu kesal degan ham ozinig amal kilip bizni Amerikida dawalitish imkaniyitiga iga kiliman degan idi. U shu chagda bizni nahayiti tapsiliy takshurgan. lekin keyin u ketip kayta alake kilmiduk. u amal tapalmigan bolishi mumkin. man uning Amerikining kaysi yerida kaysi dohturhanida ikanligni soriwalmaptiman. uning E-mail adresi we ismi bar. halisngiz siz hat yezip uningdin sorap beking. balkim u jawap berip kalar.

Man korgan materyallar boyiche eytkandimu mushu kesal ikanligi enik. buninga enik diyagnoz koyushka bizde bu yarda bashka sharayit yok. bulardinmu bilgili bolmisa, man ozumning ahwalini  bolsa yanimu tapsily Uygurche  yazay.

Men u xetni tapshurup alghandin kiyin, bu qizning bu kisilige munasiwetlik tiximu kop uchurlarni izdep tipip korup chiqtim. U qizning kisellik alametlirige ohshap kitidighan muskulgha ozuqluq yitishmeslik kisilidin Duchenne Muscular Dystrophy (DMD), Becker Muscular Dystrophy (BMD), Emery-Dreifuss Muscular Dystrophy (EDMD), Limb-Girdle Muscular Dystrophy (LGMD), Facioscapulohumeral Muscular Dystrophy (FSH or FSHD), Myotonic Dystrophy (MMD), Oculopharyngeal Muscular Dystrophy (OPMD), Distal Muscular Dystrophy (DD), Congenital Muscular Dystrophy (CMD) qatarliq 9 hili bar iken. U 9 xil kisellerning ichide kem digende 6 xili qiz oghullarda oxshashla korilidiken, hem shundaqla kisellik alametliri yenggil, kiselning tereqqi qilishimu asta, aqiwiti xilila yaxshi iken. Eger bu qiz giriptar bolghan kisel hazirqi diyagunuzdiki kisel bolmay, bashqa bir kisel bolsa, u waqitta u qizning we uning 2 singlining aqiwiti hazir oylighandin kop yaxshi bollatti. Shunga men bu qizgha towendiki xetni yolludum

Singlim,

Men siz digen adem bilenmu alaqiliship baqay, biraq sizning kisilingizge ohshap kitidighan kiseldin 9 hil kisel bar iken. Shunga bezide kisel alametligila qarap qaysi kisel ikenligige hokum chiqarmaq anche asan emes. Ege muskuldin azraq ilip "muscle biopsy yaki 活组织检查" digen tekshurushni qilghan bolsingiz, bu arqiliq iniqraq diyagunuz qoyghuli bolidu. Eger imakaniyitingiz bolsa towendiki shu 9 xil kiselge ahit matiryallarni tepsile korup chiqing.

2007-yili 2-ayning 2-kuni bu qizdin towendiki xet keldi.

Siz awetkan materiyalni man tapsily korup chiktim. men ozumning ahwalim hakkida nemilarni deyish kerakligini bilmay kalgan idim. materiyalni korup bildimki, mening we singillirimning kesallik alametliri putunlay shu matiralda deyelganga ohshash ikan. buningda kilchimu hatalik yok. pakat oahshimaydigan yeri, mening kesallik ahwalim 9~10 yeshimda bashlangan, ahwal putunlay matriyalda deyiilganga ohshash, lekin kesallikning egirlash suriti intayin asta, materiyalda deyilganning aksicha man hazirgiche mengip-harkat kilip yuralayman. parizimche tez bolgandimu 3~5 yilgiche andin kolum harkattin kelishi we manhalmaydighan bolup kelishim mumkin. ikkin singlimmu shundak kichik, singlimning kesli amdila bashlandi, ularning ahwali meningkdin yahshi, chunki ularning kisellik alamiti 12 yashtin bashlangachka, unche egir amas.

Bu qizning kallisigha shu kisel bekla singip ketken bolup, doxturlarning aldirap qoyghan ihtimalliq diyagunuzi bu qizgha rohi jehette xilila tesir qilghan idi. Bu qizning bu rohi halitini ozgertish bekla zorur idi, biraq qandaq ozgertish kirek? Uninggha tepsile chushendurush bilen qayil qilarliq pakit ispatlar kirek idi. Shuning bilen men yene izdinishke mejbur boldum.

Men bu qizgha keyni keynidin towendiki ikki parche xet bilen nurghunlighan munasiwetlik matiryallarni tipip ewetip berdim.

Singlim,

Undaqta men siz digen hiliqi ademge het yizip alaqe qilip baqay. Siz ozing toghursida manga toluqraq melumat biring. Misalen ismingiz, nede turisiz, u kishi qanchan qayerde siz bilen korushken qatarliqlar, ish qilip diyishni halighan ehwalingizni manga toluq dep biring. Bolmisa u kishi mining dimekchi bolghunumni bilelmey qilishi mumkin. Undin bashqa men bashqa munasiwetlik kishiler bilenmu alaqiliship korey.

Singlim,

Men gerche kop tereplime izdengen bolsammu, biraq unumi yahshi dep qaralghan doridin birernimu tapalmidim. Mutleq kop sandiki dawalash tihi sinaq mezgilide bolghachqa, eng ahirqi hokum tihi chiqirilmighan iken. Men her halda yene dawamliq izdinip korimen. Eger bir uchurgha irishelisem sizge hewer qilimen. Uningghiche siz diyagunuz ishini yenimu iniq qilishqa tiriship korung.  Chunki bu kisel siz digendek alametkila qarapla jezmenleshturidighan kisel emes. Men deslepki hitimde digendek alametliri ohshushup kitidighan kiseldin 9 hili bar iken. Tetqiqatchilar nurghun yil waqit we nurghun pul serip qilip tetqiq qiliwatqan kiselning qizlardimu korilidighanliqini bilmey qalmasliqi mumkin. Men bu kiselge munasiwetlik nurghun matiryalni kordum, bu kisel bir hil irsi kisel bolup, asasliqi muskulning asasliq terkiwi bolghan bir hil aqsilning kemliki tupeylidin bolghan kisel iken, qiz bala bu kiselning ginini oz ata anisidin warisliq qilghandin kiyin kiyinki ewlatidin oghligha qaldurup kitidiken, biraq ozi kisel bolmaydiken. Sizning atingiz we yaki sizning chong dadingiz tereptin birersi bu kiselge giriptar bolup baqqanlar barmikan? Ashuni uqup biqing, undin bashqa CK (creatine kinase 肌酸激酶) tekshurtup biqing.

2007-yili 2-ayning 4-kuni bu qizdin towendikidek jawap keldi

Man siz sorigan ahwallarni eniklap andin jawabini beray.

Muskul elip takshurtush maslisida 2 yil awal singlimning put-pachak muskulidin azrak elip uni beyjinga awetip takshurgan.ular mushu kesal dap dignoz koygan. man bu haktik ishanchlik uchurlarnimu izdap bakay.

Siz Amerikidiki bu kesalni tatkik kilidigan dohturlar bilan maslihatliship korsingiz, biz muskul awrishkisi elip ularga awetip berish mumkin bolsila awetip berayli. ular ozliri takshurup baksa bolidu. shundak bolmigiche ular ishanmasliki mumkin.

2007-yili 2-ayning 5-kuni bu qizdin towendikidek jawap keldi

Assalamualaykum!
Amdi u Amerikilik dohtur bilan alake kilshning hajiti kalmidi. Man aptinum rayunluq halq dohturhanisidiki dohtur bilan alakilashkan idim. Hiliqi Amirkiliq kishi tehi yekindila Urumchiga kelip ktiptu. U DMD kelsili dohturi amaskan. Dohturning deyishicha u Amerikilik bizning kesal alamti DMD ga ohshash bolsimu lekin kesip bir nema diyalmaptu, bizning DNA takshirip ishanchlik diyagnozga eriship bikeshimiz kerakligini degan ikan.

Yana Beyjingdiki kichik singlimning ahwalini takshurgan kishilar shundakla shinjangdiki dohturlarmu u kesal bolishi mumkin daptu, ishanchlik bir diagnoz yok ikan. DMD kesili diyagnoz koyush murakkap kesal ham Jungoning bu haktiki tatkikatliri, sawiyisi yetarlik bolmigini uchun shundak bolishi mumkin dap paraz kildim. DNA takshurishinimu pakat Beijing yaki Shanghaydila kilgili bolarmish. manmu enik ukmaymen.

Demak bizning kesilimiz hakkidi diyagnoz enik amas. bu ajiba namsiz bir kesalmu? ahwalimiz putunlay siz awatkan materyaldikiga ohshahs, lekin bu kandak kesaldur? man barganche gangirap kaldim.

Siz u dohturlar bilan alakiliship baksingiz, biz kandak takshurtush usuli kollansak enik diyagnozga erishalaymiz? muskul awrishkisni awatish imkaniyiti barmu? DNA takshurishi kilsa hokum kilgili bolamdu? man kandak kilishni bilmayman. man kop izdinip korup, bu kesalni dawalitish imkaniyiti hazirhca yokkan dap karap yana izdiniwerishtin waz kachmakchi bolgan idim. nurgun tatkikatlar siz eytkandak tatkikat ustida ikan. bizda bu yarda dawalinish hatta ishanchlik diyagnozgimu shart-sharait bolmaywatsa. lekin yana ikki singlimni dap tirishchanlik korsitip bakay dap torda Italiya, Girmaniya, Amerikidiki bazi tatkikat orunlirigimu hat yezip kattim, bazili jawap yazdi, u yarlardimu ohshashla dawalash imkaniyiti yokkan. amma DMD bolsa 20 yashkichila yashash imkaniyiti barkan, bizning alamiti ohshash bolsimu tehi heliham normal bolmisimu harkat kilip yuruptimiz. (steam cell) ghol hujayra kochurush arkilik dawalshta Italiya dohturliri haywanatlar tenida bolsimu tatkikat elip berip muwappikiyat kazangandin keyin, man kaytidin umitlinip chetladikilar bilan alak kilip bakay dapla sizga biraylaning tonushturishi bilan hat yazgan, u kishi nemila bolmisun umitsizlanmaslikni dap kop uchurlar bilan taminligan ham madat bargan idi. siz awatkan materyalning biridiki boston children's hospital ---ning tatkikatchilirimu hujayra kochurush arkilik dawalshni tatkik kiliwatkanlini daptu.

mayli bu haktiki tatkikatlar kandakla bolmisun bir nachhca yilgicha bu kesal hakkida unumluk dawalash charisi tepilishiga ishiniman. lekin bu Jungoda amas, shunga man imkan bar chatallar bilan alake kilay dap oylidim. sizning kop yardam kilginingizga rahmet. man nema kilishni bilmayman pakat silarning yol korsutishinglargila mohtajman. shunga imkaniyat bolsilla bu jahatlarda yardimingga bakmu mohtajmen. saghlam tanga hech narsa tang kalmaydikan. shunga biz bar amallar bilan  dawalinish imknaiyitiga erishish uchun tirishiwatimiz, man hech bolmisa ikki singlim bolsimu mushu kesal azabidin kutulsa dapla oylaymen.

ahwal mana mushundak, yena nema ahwallarni bilmakchi bolsingiz man dap beray, yoshurgudak ish yok. man pakat silarning maslihatinglarga mohtaj. sizninng kimlikingizni we tapsil ahwalingizni man bilmaymen. biliwal torida asarliringizni kordum. bashkilarning tawsiyisi bilan hat yazdim.

helimu kop aware kildim. sizning daslapta jawap hat yezishingizning ozila man uchun chong tasalli ham yardam. rastinla kop rahmat.

Men bu qizning yuqarqi xetlirini korup chiqqandin kiyin, bu qizning qarishini ozgertish sharahitning piship yitilgenligini his qilip, yuqarda men dep otken 9 xil kiselning aqiwiti yaxshi, kisellik alametliri u qizning kisellik alamitige oxshushup kitidighan bezi kisellerge munasiwetlik matiryallar bilen towendiki xetni ewettim.

Singlim,

Men sizning kisellik alametliringizge ohshushup kitidighan alametliri bar kisellerge ahit bezi matiryallarni ewettim. Waqit serip qilip korup chiqing. Mining ularni sizge ewetip birishimdin mehset, sizni oz kisilige bolghan tonushini osturiwalsun dimekchi. Siz hazir qiyas bilen qoyulghan diyagunuzgha asasen, ozingizge eng ighir bolghan kiseldin bir yuklep olturmay, aldi bilen diyagunuzgha nisbeten iniq yekun chiqarsun dimekchi. Chunki sizde bar bezi alametler bezi adettiki yenggil kisellerdimu bolidiken. Shundaq bolghanda sizning kelgusingiz unche qorqunushluq emes. Belkim siz hazir oylighandek undaq yaman aqiwetkimu qalmasliqingiz mumkin. Hetta 50, 60 yash hette uningdinmu artuq omur korelishingiz mumkin. Ish qilim mining perizimche siz herguzmu siz oylighan u kisel emes, siz uningdin hili yenggil bolghan bir kisel, hem aqiwitingizmu siz oylighan hiliqi kiseldin kop yahshi. Hazirche waqit munasiwiti bilen mushu yergiche yazay. Siz ewetken matiryallarni tepsile oqup bolup manga het yizing. Andin kiyin kiyinki qedemni qandaq mingish toghursida oylishayli.

2007-yili 2-ayning 8-kuni u qizdin towendikidek jawap keldi.

rahmat sizga, man bularnimu chokum tapsily korup chikiman, siz eytkandak enik bir diyagnoz bolmigini uchun man bak kop ugunish -okush pursatliridin mahrum kaldim. dohturlar burun DMD kesili dapla 20 yashka kirguche olup ketishi mumkin degachka (buni man tehi keyin tasaddipi anglap kaldim) man hatta oydikilarmu shundak dap karap umitsizlinip tekdirga tan berip oyda olturup ahirki akiwatni kutushka majbur bolgan. lekin man barganche u yakunlardin gumanlinip kaldim. shunga hech bolmisa ikki singlim uchun dap ahirigicha bal koyiwatmaslik karariga kaldim. sizga rastinla kop rahmat, man enik bir diyagnozga tolimu mohtaj idim. shundila singillirim uchun  ham ozum uchunmu kandak kilish kerakligini bilishim, umitlinishim mumkin.

2007-yili 2-ayning 9-kuni u qiz towendikilerni yizip ewetiptu

materyallarni korup chiktim. u hil kesalliklarda deyilgan kesal alamtlirning bazili manda yok.  yurak we napalinish sestimis shundakla bashka agashme kesallaiklar barmu yok man uni bilmidim yaki u asta-asta bilinishi mumkin. meningche bu kesal mening ikki bilikim we putumning normal harkitiga toskunluk kilsh, shundakla badandiki muskullarning normal tarekkiy kilalmasliki katarlik alamatlarda ohshaydu. bazi alamtlarni man sazmigan bolshum mumkin. ishkilip mushu kesallarning birar turiga kirsa kerak. man ang korkidighan ish bashka amas pakat put-kolumni normal harkatlanduralmay kelishtin shundak ansirayman. heliham kandak kiyinchiliklarga uchrawatkanlikimni balkim tasawwur kilalishinigz mumkin. ham bu sawap mahrum bolgan nurgun narsilar hata diyagnoz koyulushmu bak yaman ahwallarni kalturup chikiridikan. mening ahwalimga kasip ahliliri we mutahhasislarla diyagnoz koyaligudak. sizdin man bu hakta otunidiginim siz til we sharait jahatlarda nurgun awzal sharaitlarga iga bolgandikin bu hil kesalliklarning har kandak turi, almaiti, akiwiti, bu kesalni halkarada tatkik kilidigan dohturhana, tatkikat orunliri, ularning tor batliri, E_mail adresliri degandak barlik materyallarni ratlap, Uygurchiga tarjima kilip torda ,ang muhimi uygur rayonidiki ilmiy yurnallarda elan kilish yaki kitap tuzush arkilik bu hakta uygur dohturliriga atraplik malumat barsingiz ham materyallar bilan taminlisingiz bizdak bimarlar uchun bakmu yahshi bolattikan.bolmisa bu dohturlar sawiyasizlik ham kilcha dohturluk sapasi yok pozitsiya bilan ....bu kesalga dawa yok...mushundak turidu...kandak kesalkin...dap yurmisikan dayman. ashu iktisadi ahwali nahcar, bilim sapasi towan bu halkingiz birar dawalinish pursitiga erishalmigan halattimu, enik dignozga iga bolsa sharait yar barganlar chatallarga berip dawalinalisa bu bakmu yahshi ish bolatti. kasip dairingizda bolmisimu azrak zehin ham waktinigzni sarp kilsingizla bu hil kesal bimarliriga kop yardamlarni kilip bargan bolattingiz. alwetta sizmu allikachan oylap bolgansiz, manmu imkaniyitim bolsa bu hakta izdinip koriman.

agar birar yahshu hewerga eriship yardam kilishni halisingiz lazim bop kalar.
kesilim hakkide burunrak bilgan bolsam kashki, okushni tohtatmas idim, hatta chatallarga chikish pursitimu bolgan, karimamsiz olup kaliman, mangalmas bop kaliman dap bolmigan ishlarga andisha kilip waktim oyda ahirki akiwatni kutup olturush bilan israp bop ketiptu, ham ata-ana bolguchilarningmu masuliyiti bar, ular righbatlandurishi, tagdirga tan beripla olturmay tirishish kerakligini eytishi, kop koyunishi ham gamhorluk kilishi kerak idi. kandak kilimiz, millitimizning bilim-sapasi chunchiliklakan. helimu ata-apam bizni mushundak halettimu okutti, har jahattin sharahitlarni yaritip bardi. balkim tagdir shundaktu, bazi narsilarni pakat tirishish bilan kolga kalturgili bolmaydikan.

sizning yardimingizdin bakmu minnatdarman. bolsa koprak yol korsitip turarsiz, atamdin bashka ar kishi bolmigach keyinki kunlarda himayisiz, yar-yolaksiz kalarmizmikin dap ansirayman. alla buyrisa hamma ishlar yahshi bop ketar. chidap kurash kilishtin bashka nema amal bar hazirche ...

Mining bu qizgha yazghan jawap xitim

Singlim,

Sizning hayatliqqa intilish rohingiz, shundaqla ozingizning we ikki singlingizning salametliki uchun korsetken tirishchanlighingiz heqiqeten ezizleshke erzidu. Insan bu dunyada yashaydiken haman umutwar bolush kirek. Shunga konilar, “Olmigen jahanda umut bar. Sewep qilsang sewette su tohtaydu” digendek aqilane sozlerni bizge qaldurghan iken. Umutwar bolung. Mining qarishimche siz we ikki singlingiz siz hazir oylighan u qorqunushluq kisel emes. Miningche siz shu 9 xil kiselning ichidiki yengilrek birsi. Miningche diyagunuz haman iniq bolidu. Men bu jehette yenimu izdinip korimen. Hazirche siz meyli qaysi kisel bolushtin qetti nezer, diyagunuz iniq bolamdu yoq, umutwar bolup, yetmekchi bolghan arzu istekliringizni emelge ashurushqa tirishing. Ozingizni normal, saghlam ademlerdek korup, hoshal horam yashang. Chunki sizning bu kisilingiz birt ikki kunluk we yaki aldirghangha aldiraydighan kisel emes. Haman bir kuni amal tipilidu. Haman bir kuni shipaliq dawalash dunyagha kilidu.

Izzahat

Oxshash kechurmushliri barlargha az tola paydisi bolup qalar digen mexsette, men bu yazmilarni retlep tordashlargha sundum. Mining qarishimche bu herguzmu bu qiz we uning ahilisige kelgen kilishmeslik emes, Uyghurlarning ichide bu xil kiselge giriptar bolghanlardin yene nurghun kishiler bolushi mumkin.  Insan hayatida her xil kisellerge giriptar bolushi, beziler ixtizadi seweptin, beziler bolsa dawalinish sharahiti we texnika towen bolush tupeylidin unumluk dawalinish pursitige ige bolalmasliqi mumkin. Yene beziler bolsa toghura diyagunuzning qoyulmasliqi sewibidin, umutsizlinip, nurghun rohi azaplarni tartishi mumkin. Bu qizdiki umutwarliq, ozi we ikki singlisining hayati uchun izchil izdinish rohi heqiqeten qedirleshke erzidighan bir xil roh. Ishinimenki bu qiz shu izdinishliri arqiliq ozidiki rohi yuktin azad bolidu, we oz kisilge hazirche unumluk dawalash amali tapalmighan teqtirdimu, u ozi giriptar bolghan u kiselning unche qorqunushluq kisel emesligini, aqiwitiningmu doxturlar digendek, we ozi oylighandek unche qorqunushluq emesligini bilip yitidu, shuning bilen u qizning kelgusi hazirqidin nechche hesse yaxshi bolidu. U qizning umutwar bolup, dadilliq bilen yashishini, hayatliq yolida tiximu izdinip ozige oxshash kiselge giriptar bolghan bimarlargha olge bolushini chin konglumdin umut qilimen.

Eger bu qizning bu kisilige munasiwetlik yingi uchurlarni bilidighanlar bolsa, we yaki bu qizgha paydisi bolup qilish ihtimali bolghan herqandaq uchurlar bolsa, bu yerge chaplap qoyshunglarni we yaki manga yollap birishinglarni umut qilimen.

Memet Emin

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Men bu qizdin 2013-yili 12-ayning 11-kuni yene bir parche xet tapshurup aldim. U qiz xitide shexsi turmushida we salametlikide chong ozgurushlerning bolghanliqini, salametlikining yiqindin biri kop nacharliship ketkenligini yiziptu. Eger bu qizning yiqinqi ehwaligha qizziqsingiz towendiki xetni oqung. Eger siz bu qizgha az tola teselli birip qoyay disingiz, bu adirisqa xet yizing. akida116@hotmail.com

ئەسسالامۇئەلەيكۇم

مېنىڭ سالامەتلىك ئەھۋالىمدا جىق ئۆزگىرىش بولۇپ كەتتى، سىڭىللىرىمنىڭكىدە  ھەم شۇنداق. بەلكىم بۇلارنى دېسەم كۆڭلىڭىز يېرىم بولىدۇ. بۇ كېسەل سەۋەبىدىن بەدەن بەك كۈچسىز،بولغاچقا سەل ھەركەتلەر قولاشماي قالسا ياكى كۈچسىز ئەھۋالدا مېڭىپ كېتىۋېتىپ ئاسانلا يىقىلىپ چۈشىدىغان ئەھۋال بار. شۇڭا تولا يىقىلىپ يارىلانغان يەرلىرىمىز جىق، تولىسى پۇتىمىزنى قايرىۋاپ دېگەندەك. مەن بۇ ئەھۋالغا بەك ئېغىر يولۇققان بولدۇم، سىزگە دېگىنىمكىدەك ئىككى قېتىملىقى بەك ئېغىر بولدى، تۇنجى قېتىمدا بىر يىلغا يېقىن ۋاقىت ئىچىدە ئاران ماڭىدىغان بولغان ئىدىم، يارا بەك ئېغىرمۇ بولمىسىمۇ،كېسەللىك سەۋەبىدىن كۈچەپ ھەركەت قىلىشقا ئامالسىز بولغاچقا ۋە ماغۇر بولمىغاچقا شۇنداق ئىدى. كېيىن ياخشىلانغاندا يەنە بىر ھادىسە بولۇپ بۇ قېتىمقىسىدا يوتا تەرەپتىن سۇنۇپ كەتكەچكە ئوپراتىسىيە قىلىپ، سۇنۇقنى مىخلاشقا توغرا كەلدى، بۇنىڭدا ئالتە ئايغىچە يەر دەسسەشكە بولمايتتى. باشقا بۇنداق ئەھۋالغا ئۇچىرىغانلار بولسا ئوپراتسىيە تۈگەپلا قولتۇق تاياق بىلەن بىر پۇتى ساق بولغاچقا جىق قىينالمايتتى. ئەمما ماڭا مۈمكىن ئەمەس،قولۇممۇ كۈچسىز،بەدەنمۇ مۇسكۇللارنىڭ ئاجىزلىقى سەۋەپلىك ماغدۇرسىز،ئۇ ھالدا قولتۇق تاياقتا مېڭىشىمغا قىلچە ئامالىم يوقتى، شۇنىڭ بىلەن مەن چاقلىق ئورۇندۇقتا ئولتۇرۇشقا مەجبۇر بولدۇم.كېيىن ئەسلىمگە كەلگەن بولساممۇ ئەمما مېڭىشقا ئىمكان بولماي قالدى، بۇ كېسەلدە ھەركەت قىپ تۇرمىسا مۇسكۇللار تېخىمۇ ئاسان كۈچسىزلىنىپ كېتىدىكەن، بىر يىلغا يېقىن ۋاقىت ھەركەت قىلمىسا نېمە بولماقچى؟ ھەم ئەسلىدىمۇ بۇ كېسەللىك ئەھۋالىدىن قارىغاندا كېسەل كۈنسېرى بىر خىل بىلنەر بىلىنمەس ئېغىرلاپ بارىدىكەن. مەن سىز تۇنجى قېتىم بۇ كېسەللىك ماتىرىيالىنى ئەۋەتكەندىلا بۇنى ھېس قىلغانتىم.

بۇ كېسەللىك بىرنەچچە خىل تۈرلۈك بولۇپ، ئەڭ ئېغىر بولغىنى ئوغۇللاردىلا بولىدىغان <د.م.د>  ئىكەن،يەنە بىر ئۇنىڭدىن قالسا <ب.م.د> بولۇپ، مەن بىزنىڭ كېسەللىك ئەھۋالىمىز شۇ تۈرىمىكىن دەپ قالدىم.  چۈنكى شۇنىڭدا كېسەللىك ئېغىرلاشقاندا ماڭالماس بوپ قالىدىغانلىقى دېيىلگەن ئىكەن.

 باشقا تەرەپلەر نورمال ئاساسەن،ئەمما شۇنداق سەۋەبلەر بىلەن مەن قايتا ماڭالماي، ھازىرغىچە چاقلىق ئورۇندۇقتا ئولتۇرىمەن. چاقلىق ئورۇندۇقتا ئولتۇرۇپ ئۆز ئىشلىرىمنى ئۆزۈم قىلىپ، تاماق ئېتىش، كىر-قات يۇيۇش، ئۆيلەرنى تازىلاش دېگەندەك ھەرھالدا باشقىلارغا موھتاج بوپ قالماي يۈرىۋاتىمەن، بۇرۇندىنلا ئىدىيە تەييارلىقىم بولغاچقا بۇنىڭدىن بەك كۆڭلۈم يېرىم بوپ كەتمىدى، شۇ چاقلىق ئورۇندۇقتا ئولتۇرۇش دەسلەپلەردە ئېغىر كەلدى، كىشىلەرگە ئارىلىشىپ ئۆتۈشمۇ ئېغىر بىلىندى، قېچىپ،ئارىلاشماي دېگۈدەك ئۆتكەنمۇ بولدۇم. بارا-بارا بۇ رېئاللىقنىمۇ قوبۇل قىلدىم، ھازىر كۆنۈپ كەتتىم، ئۇنداق ئاھ ئۇرۇپ،ئۈمۈدسىز بوپمۇ يۈرمەيمەن، ياخشى بوپ كېتىمەن ھامان بىركۈنى دەپ ئۈمۈتلىنىپ ئولتۇرۇپتىمەن، ئاللاھ خالىسا...سىز بىلەن خەت يېزىشقا باشلىغان ۋاقىتلار 2006-يىللارغۇ دەيمەن، شۇنچەلىك جەرياندا كېسەللىك ئەھۋالىم مۇشۇ ئەھۋالغا كەپتۇ، بۇن مەنچە ئەڭ ئېغىر ھالىتى، بۇندىن ئارتۇقمۇ بوپ كەتمەيدۇ ئەمدى.

يەنە بىر سىڭلىمغا كەلسەك ئۇ ئۆتكەن يىلى توي قىلغان، بۇ يىل يازدا بالىلىق بولدى. ئېغىر ئاياغ بولغانقا قەدەر مېڭىپ، ئۆز ئىشلىرىنى، ئائىلىسىنىڭ ئىشلىرىنى قىلىپ دېگەندەك يۈرەتتى. ئېغىر ئاياغ بولغاندىن كېيىن بارا-بارا بەكمۇ تېز ئاجىزلاپ كەتتى، يەنى مۇسكۇللار ئاجىزلىقى سەۋەبىدىن شۇنداق بولدى، مېڭىشى تەسكە توختىدى،سەۋەبى ئېغىر ئاياق بولغاچقا بالىسدىن ئەنسىرەپ قالدى، ئەگەر يىقىلىپ-تارتىپ قالسا ھامىلىگە تەسىر يېتىشىدىن ئەنسىرەپ جىق ھەركەت قىلمايدىغان بولدى. بالا چوڭ بولغانسېرى، سەمرىپ، ئېغىرلاپ ھەركەت تېخىمۇ قولايسىز بولدى... كېيىنچە ئامالسىزلىقتىن ئۇمۇ سالامەت تۇغۇۋېلىش ئۈچۈن ھەركەت قىلىش توغرا كەلسە چاقلىق ئورۇندۇقتا ئولتۇرۇشقا مەجبۇر بولدى... يازدا يەڭگىدى، بالىسىمۇ بەك سالامەت، ھازىر شۇنداق ياخشى چوڭ بولىۋاتىدۇ. سىڭلىمنى دوختۇرلار ئۆزى تۇغالمايدۇ، ئوپراتسىيە قىلمىسا بولمايدۇ دەپ تۇرۇپلىۋالدى. بىز ئۆزى تۇغسا سالامەتلىكىگە پايدىسى بولارمىكىن، بەك قىينىلىپ كەتمەسمىكىن دەپ ئۆزى تۇغۇشىنى شۇنداق تەلەپ قىلغانتۇق، ئەمما ئۇلار قورقىتىيۋەرگەنكىن ئامال يوق، بالىنىڭ سالامەتلىكىنى دەپ ئوپراتسىيە قىلدۇردۇق... سالامەتلىكى ئەسلىگە كەلگۈچە ئارتۇق ھەركەتمۇ قىلماي يۈردى... ھازىر ئەسلىگە كەلگەن بولسىمۇ ماڭماي، ئاز-تولا چېنىقىپ، بالىسىنى بېقىپ ئولتۇرىۋاتىدۇ. ماڭاي دېسىمۇ ئامال يوق، بەدەن جىق كۈچسىزلىنىپ كەتكەن، بۇنى پەقەت ھەركەت قىلىش بىلەن ئەسلىگە كەلتۈرۈش مۈمكىن ئەمەسكەن، چۈنكى كېسەل تاشقى تەرەپتە ئەمەس، مۇسكۇل-نېرۋىلاردا تۇرسا. بىزدىمۇ ئامال يوق... كىچىك سىڭلىم ئالىي مەكتەپتە ئوقىۋاتىدۇ، ئۇ مېڭىپ يۈرگەن بولسىمۇ بىزگە قاراپ كۆڭلى يېرىم بولىدۇ، ئۇمۇ تەقدىرىنىڭ قانداق بولىشىنى پەملەپ قالدى، ئەمما ئامالسىزمىز.

ئەھۋال شۇنداق... ئاتا-ئانامغا بۇ ھاللار بەك ئېغىر كەلدى، بىزگىمۇ شۇ. شۇنداقتىمۇ يۈرۈپتىمىز تەقدىرگە تەن بېرىپ. ئەمما ئاللاھقا كۆپ شۈكرى، سىڭلىمنىڭ يولدىشى شۇنداق ياخشى، ئۇنى بەك قەدىرلەپ، كۆيۈنىدۇ، شۇنداق ياخشى قارايدۇ. ئەتراپىمىزدا قانچىلىك ئەرلەر بار دەيسىز، ساپساق ئاياللىرىنى تاشلاپ، خارلاپ يۈرمەمدۇ؟ ئاللاھ بىردىن ئايرىسا بىرىنى بېرىدىكەن، ئۇنداق تاشلاپمۇ قويمايدىكەن. ئاتا-ئانام ئۆيىمىزدە ئوغۇل بولمىغاچقا، تۇنجى ئوغۇل نەۋرىمىز دەپ خۇشلىقىدا سىڭلىمنىڭ بالىسىنى قولدىن چۈشۈرمەي بېقىپ، ئۇلارغا بەرمەي شۇنداق ياخشى ھالىدىن خەۋەر ئاۋاتىدۇ، بالىمۇ ئوبدان ئۆسۈۋاتىدۇ، ئاللاھقا شۈكرى.

مېنىڭ يولدىشىممۇ ماڭا شۇنداق ياخشى كۆيۈنىدۇ، سىڭلىمنىڭمۇ، مېنڭمۇ يولدىشىم، دىندار،دىيانەتلىك كىشىلەر بولغاچقا بىزگە ئاشۇنداق ياخشى مۇئامىلە قىپ، قەدىرلەپ ئۆتىۋاتىدۇ، ئاخىرىغىچە ياخشى قىلىۋەتسۇن ئىلاھىم. يولدىشىم ئوقۇيدۇ، مەن چەتەلدە ئوقۇش مەخسىتىدە پاسپورت بىجىرگەن ىدىم، ساقچىلار ھەجدىن كېيىن بېرىمىز دەپ ئېلىۋالغاندىن كېيىن پەقەت بەرمىدى، ئاتامنىڭكىنى قايتۇرۇپ بەردى، مېنىڭكىنى بولسا ياغلىق ئارتىدىكەن... دېگەن سەۋەپ بولسا كېرەك، يا سەۋەبىنى دېمەيدۇ، تايىنى يوقلا گەپلەر بىلەن بەرمىدى. بولمىسا ئائىلىمىزدە ئۈچ بالىنىڭ مۇشۇنداق كېسەللىكىنى ناھايىتى ياخشى بىلىدۇ. ئۇلاردا قىلچلىك ئىنسانىيلىق دېگەن نەرسە يوقكەن، بىر مىللەتنىڭ ئېتىقادى، دىنى،كىيىنىشى سەۋەپلىكلا ماڭالمايدىغان مېيىپ،كېسەل بولغىنىمىز بىلەن كارى بولمىدى، داۋالىنىمىز دېگەنلەرگىمۇ قۇلاق سالمىدى... بۇنداق كېسەل ھالىتىمىز بىلەن نېمىمۇ قىلالارمىز،  بىز ئۇلار ئەنسىرىگۈدەك؟ بولدىلا،بۇ ھەقتە سۆزلىسەم جىق سۆزلىۋەتسەم كېرەك. بەكمۇ دوختۇرلۇقتا ئوقۇغۇم بار ئىدى،كېسىلىم ياخشى بوپ كەتسە چوقۇم دوختۇر بولىمەن دەپ ئارزۇ قىلاتتىم. كېسەل ئازابىنى تارتىپ كەتكەچە بىر ياخشى دوختۇر بولۇشنى شۇنداقمۇ ئارزۇ قىلىمەن، ئەمما بارغانچە بۇ ئارزۇلار يىراقتا قالغىلى تۇردى.قېنى ياخشى بوپ كېتەر.

ئەھۋالىمىزنىڭ بۇ ھالدا ئىكەنلىكىنى ئويلىمىغان بولغىيدىڭىز؟مەنمۇ كۆڭلىڭىزنى غەش قىپ قويماسلىق ھەم مالال قىلىشىمنىڭ زۆرۈرىيىتىمۇ يوق دەپ بەك چوڭقۇر دەپ كەتكۈم كەلمىگەنىدى. كېينكى ئىشلارنىڭ نېمە بولۇشىنى ھېچكىم بىلمەيدۇ،ئاللاھ خالىسا ھەممە ئىشلار ياخشى بولۇپ كېتەر.

بىزگە كۆڭۈل بۆلۈپ كېلىۋاتقىنىڭىزغا كۆپ رەھمەت،دائىم سىزنى مالال قىلىمەن، ئاللاھ سىز ۋە ئائىلىڭىزگە ئىككىلا ئالەمدە ساق-سالامەتلىك،ياخشىلىق بەرسۇن، ئامان بولۇڭ.

سالام بىلەن

<د.م.د> : DMD: Duchenne Muscular Dystrophy http://mda.org/disease/duchenne-muscular-dystrophy

<ب.م.د>: BMD: Becker Muscular Dystrophy http://mda.org/disease/becker-muscular-dystrophy

Muskul yigdep qilish kisili

Muskul yigdep qilish kisili (Muscular Dystrophy, 肌肉萎缩症) bolushi mumkin. Bu kiselning bir nechche turi bolup, uning ichide biri Duchenne Muscular Dystrophy (DMD) dep atilidu.

Duchenne Muscular Dystrophy (DMD)

Duchenne Muscular Dystrophy (DMD, 杜兴肌肉萎缩症,  杜兴肌营养不良) bolsa Firansiyelik Nirwa Kisellikler Alimi Guillaume Benjamin Amand Duchenne 1860-yili tunji bolup bayqighan muskul yigdep qilish yaki muskulgha ozuqluq yitishmesliktin muskul tereqqi qilmasliqtin ibaret bir xil irsi kisellik bolup, taki 1980-yillarghiche bu kiselning sewibining nime ikenligi toghursida kop malumatlar bolmighan. 1987-yili tetqiqatchilar bu kiselning muskul terkiwidiki “dystrophin” dep atalghan bir xil aqsilning kemliki bilen munasiwetlik ikenligini bayqighan. Yeni bu xil kiselge giriptar bolghuchilarning muskulida shu xildiki aqsil kem bolup, muskulning normal tereqqi qilishi tosqunluqqa uchuraydu. Bu kisel adette apidin oghulgha qalidighan iris kisel bolup, qiz bala bu xil kiselge giriptar bolmaydu. Yeni apisi bu kiselni qizigha qaldurghanda, qizida kisellik alimiti bolmaydu, qiz bu kiselning ginini bedinide saqlap qilip, kiyinki ewlatidin oghligha qalduridu. Bu kiselge giriptar bolghan oghul bala, tughulghanda saq tughulidu, texminen 2~6 yash etirapida kisellik alametliri korulushke bashlaydu. Bu kiselning asasliq almetliri muskulning ajizliqi we yaki maghdursizlighi bolup, deslepte iqsaghra, andin qalsa yota, pachaq, dola we bileklerning muskulliri maghdursizlinishtin bashlinidu. Muskullar saghlam tereqqi qilmaydu. Axirda nepes we yurek muskulliri qatarliq putun bedendiki muskullar ajizliship, bimarning palej bolup qilishini we olup kitishini kelturup chiqiridu. Bu kiselge nisbeten hazirgha qeder unumluk dora yoq bolup, kopunche bimarlar 20 yash etirapida olup kitidu, eng uzun bolghandimu 30 yashtin artuq omur korelmeydighanlighi dokilat qilinmaqta.


2012-yilli 9-ayning 7-kuni neshir qilinghan Nature Medicine jornalida "Exon-skipping drug pulls ahead in muscular dystrophy field" namliq bir xewer birilgen bolup, bu xewerde "Eteplirsen, Drisapersen,  Ataluren" qatarliq 3 xil dorining kilinikiliq sinaqta " Duchenne Muscular Dystrophy" digen kiselge geriptar bolghanlargha melum derijide unum bergenligi xewer qilinghan.

Bu dorilarni sinaq qiliwatqan orunlar:  Center for Duchenne Muscular Dystrophy at the University of California–Los Angeles; Sarepta Therapeutics of Cambridge, Massachusetts; Centers for Gene Therapy and Muscular Dystrophy at Nationwide Children's Hospital in Columbus, Ohio.

"Jiddi Yardem" ge inkas

Yiqinda wetendiki bir nechche tor bette we Wetinim tor bitide Awut isimlik bir oqutquqchining balisi ghiriptar bolghan kisel toghursida ilan qilghan "Jiddi Yardem" xiti tarqalaghan. Xetning mezmuni towendikiche.

Amirka we girmaniye tewesidiki uyghur doxturlardin jiddi yardem soraymen

Minining 8 yashqa kirgen bir oghul balam bar idi, 4 yashtin ashqanda turupla özlükidin yéqilip kitidighan bulup qaldi.yéqilip ketse asanliqche ornidin turalmaydu.men shuning bilen 2009-yili 4-ayda Urumchige apirip Aptunum Rayunluq 1-Xeliq Doxturxanisigha (tibbi onwérsitit) apirip tekshürütsem ular balini bir hepte tekshürüp <<érsiyet xaraktirlik muskulgha uzuqluq yitishmeslik >> késili dep di'agnuz qoyghan. bu késelning téxi hazirghiche dunyada dawasi yoq, bala köp bolsa 19-20 yashlarghiche yashiyalaydu.dédi shuning bilen mining béshimgha xuddi bir tagh yéqilghandek boldi.shuwaqittiki hésiyatimni hazir teswirlep birelmeymen. Shuyili xotenge apirip dawalitip baqay dep xotenge apirip 3kün bolghanda bala yéqilip chüshüp <<ölmekning .üstige ,tepmek >> dégendek ong puti yutisidin sunup ketti. men mushu 3-yil jeryanida balini üzüldürmey dawalitip keldim, bala hazir mangalmaydu, men uni kütürüp  talagha élip chiqimen. 8yashliq balini'i kütürmek manga anche tes kelmigini bilen apisigha tes kilidiken. men bujeryanida iqtisadi jehettin nurghun qiynaldim.lékin dawalashni, izdinishni toxtutup qoyghinim yoq. mushu xil késel bolghan balilardin 5-6 ni tunuymen. ularning beziliri teqdirge ten berdi. <<xudaning bergini shu iken>> dep balisini öyge yatquzup quyup béqiwatidu. Mining tordashlardin telep qilidighan yardimim, buxil késelning durisi amirka we gérmaniyede bar imish shu yerde tunushi barlarning manga meslihet birishini soraymen. Eger dawasi chiqipla qalsa men bir amallar bilen qeriz élip bolsimu balini dawalitimen.balini dawalatmay shu péti tashlap quyushqa her-bir ata- anining yüriki chidimaydiken. Todashlarning manga yardem birishini soraymen. Amirkidiki <<muhemmet .emin>> we <<shöhret mutellipning >> alaqilishish adirisini bilidighanlarning manga dep birishini suraymen.
Isimim: awut abdiriyim. Kespim uqutquchi, adirisim bay nahye ombash ottura mektep.  Hazir ürümchide bilim ashuruwatqach balini dawalitiwatimen.  Chch:  1498736930 tilifun:13565128510;

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Yuqarqi "Jiddi Yardem" de teswirlengen Awut Abdurehimning balisi geriptar bolghan kisellik, uning teminligen ehwaligha asaslanghanda Muskul yigdep qilish kisili (Muscular Dystrophy, 肌肉萎缩症) bolushi mumkin. Bu kiselning bir nechche turi bolup, uning ichide biri Duchenne Muscular Dystrophy (DMD) dep atilidu.

Duchenne Muscular Dystrophy (DMD)

Duchenne Muscular Dystrophy (DMD, 杜兴肌肉萎缩症,  杜兴肌营养不良) bolsa Firansiyelik Nirwa Kisellikler Alimi Guillaume Benjamin Amand Duchenne 1860-yili tunji bolup bayqighan muskul yigdep qilish yaki muskulgha ozuqluq yitishmesliktin muskul tereqqi qilmasliqtin ibaret bir xil irsi kisellik bolup, taki 1980-yillarghiche bu kiselning sewibining nime ikenligi toghursida kop malumatlar bolmighan. 1987-yili tetqiqatchilar bu kiselning muskul terkiwidiki “dystrophin” dep atalghan bir xil aqsilning kemliki bilen munasiwetlik ikenligini bayqighan. Yeni bu xil kiselge giriptar bolghuchilarning muskulida shu xildiki aqsil kem bolup, muskulning normal tereqqi qilishi tosqunluqqa uchuraydu. Bu kisel adette apidin oghulgha qalidighan iris kisel bolup, qiz bala bu xil kiselge giriptar bolmaydu. Yeni apisi bu kiselni qizigha qaldurghanda, qizida kisellik alimiti bolmaydu, qiz bu kiselning ginini bedinide saqlap qilip, kiyinki ewlatidin oghligha qalduridu. Bu kiselge giriptar bolghan oghul bala, tughulghanda saq tughulidu, texminen 2~6 yash etirapida kisellik alametliri korulushke bashlaydu. Bu kiselning asasliq almetliri muskulning ajizliqi we yaki maghdursizlighi bolup, deslepte iqsaghra, andin qalsa yota, pachaq, dola we bileklerning muskulliri maghdursizlinishtin bashlinidu. Muskullar saghlam tereqqi qilmaydu. Axirda nepes we yurek muskulliri qatarliq putun bedendiki muskullar ajizliship, bimarning palej bolup qilishini we olup kitishini kelturup chiqiridu. Bu kiselge nisbeten hazirgha qeder unumluk dora yoq bolup, kopunche bimarlar 20 yash etirapida olup kitidu, eng uzun bolghandimu 30 yashtin artuq omur korelmeydighanlighi dokilat qilinmaqta.


2012-yilli 9-ayning 7-kuni neshir qilinghan Nature Medicine jornalida "Exon-skipping drug pulls ahead in muscular dystrophy field" namliq bir xewer birilgen bolup, bu xewerde "Eteplirsen, Drisapersen,  Ataluren" qatarliq 3 xil dorining kilinikiliq sinaqta " Duchenne Muscular Dystrophy" digen kiselge geriptar bolghanlargha melum derijide unum bergenligi xewer qilinghan.

Bu dorilarni sinaq qiliwatqan orunlar:  Center for Duchenne Muscular Dystrophy at the University of California–Los Angeles; Sarepta Therapeutics of Cambridge, Massachusetts; Centers for Gene Therapy and Muscular Dystrophy at Nationwide Children's Hospital in Columbus, Ohio.

Ghol Hujeyridin yasap chiqilghan tunji dora

Ghol Hujeyridin yasap chiqilghan tunji dora

Ghol Hujeyridin yasap chiqilghan tunji dora Kanadada testiqlandi. Prochymal dep atalghan bu dora songek ilikidin ayrip chiqilghan ghol hujeyrisidin yasalghan bolup, asasliqi ilik almashturushtin kiyin kilip chiqqan bedenning almashturghan ilikni yeklesh xaraktirdiki eghir derijide egeshme kiselge ishlitildighan bolup, deslepki qedemdiki sinaqlargha asaslanghanda 60% bimada oxshimighan derijide unum bergen. Bu dorining testiqlinishining alahide tesir qozghishidi asasliq sewep uning unimide bolmastin belki uning dunyadiki tunji ghol hujeyridin yasalghan dora bolishi bolup, bu xildiki tiximu kop dorilarning bazargha kirishining tunji qedimi hisaplinishida.

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May 17, 2012

A Stem-Cell-Based Drug Gets Approval in Canada

By ANDREW POLLACK

In a boost for the field of regenerative medicine, a small biotechnology company has received regulatory approval in Canada for what it says is the first manufactured drug based on stem cells.

The company, Osiris Therapeutics of Columbia, Md., said Thursday that Canadian regulators had approved its drug Prochymal, to treat children suffering from graft-versus-host disease, a potentially deadly complication of bone marrow transplantation.

http://www.nytimes.com/2012/05/18/health/a-stem-cell-based-drug-gets-approval-in-canada.html?_r=1&smid=fb-share

HIV ni aldini ilishning yingi dorisi

 HIV ni aldini ilishning yingi dorisi

HIV bilen yuqumlunushning aldini ilish we AIDS kisilini dawalash uchun ilip birilghan 30 yilliq tirish jeryanida dunyagha kelgen dora Truvada pat yiqinda FDA terripidin testiqlinip bazargha kirmekchi iken. Bu dora HIV bilen yuqumlinishning aldini ilishta we AIDS kisilini dawalashta eng unumluk dora bolushi, we HIV/AIDS tarixida dewir halqighuch ehmiyetke ige bolushi mumkin dep qaralmaqta.

FDA panel backs first pill to block HIV infection 

SILVER SPRING, Md. — The first drug shown to prevent HIV infection won the endorsement of a panel of federal advisers Thursday, clearing the way for a landmark approval in the 30-year fight against the virus that causes AIDS.

In a move that could lead to a new milestone for treatment in the evolution of the worldwide AIDS epidemic, the Food and Drug Administration advisory committee voted 19-3 to endorse the drug's use for controlling HIV infection among the highest risk group - men who have sex with men.
The panel also approved Truvada's use for the domestic partners of HIV-infected people and others at risk for sexual transmission, but several members said there should be more data on the drug's efficacy to justify its use in the wider population.
Dr. Lauren Wood of the National Cancer Institute said she voted against all preventive applications because clinical studies did not measure the dangers of drug-related renal problems among black people, who are among the hardest impacted by HIV infection and the most susceptible to kidney problems linked to AIDS drugs.
"I don't think that is adequate when you're talking about the population that is most at risk," she said.
The FDA is not required to follow the panel's advice, though it usually does. A final decision is expected by June 15.
Nearly 1.2 million Americans are infected with HIV. But clinical research, which shows Truvada to be effective at preventing the spread of HIV among people who take the pill daily, has raised hopes that the United States could stem the growth of a national HIV epidemic that has stubbornly generated 50,000 new infection cases a year for the past two decades.

Studies showed Truvada to be more than 90 percent effective at preventing HIV infection among test subjects who took the drug as prescribed, but only 44 percent effective among test populations that included intermittent use.
Stupendous harm While panelists ultimately backed Truvada for prevention, Thursday's 12-hour meeting highlighted a number of concerns created by the first drug to prevent HIV. In particular, the panel debated whether Truvada might lead to reduced use of condoms, the most reliable defense against HIV. The experts also questioned the drug's effectiveness in women, who have shown much lower rates of protection in studies.
"If taken, it works," Dr. John Mellors, chief of the infections diseases division at the University of Pittsburgh, who spoke as part of Gilead's presentation.
"Existing interventions have not reduced the number of new infections annually and new measures are needed," he said.

But panel members expressed concern about prospective FDA guidelines that call for education and training for prescribing physicians but avoid basic restrictions on the availability of the treatment.
Some said drug recipients should be required to undergo regular HIV screening to them from becoming HIV positive while taking the treatment and unknowingly passing drug-resistant HIV strains to their sexual partners.
"The potential for harm here is stupendous. If we were not to pay attention to that, we would have the potential as an advisory committee to do more harm than good," said panel chairwoman, Dr. Judith Feinberg of the University of Cincinnati College of Medicine.
The committee voted after hearing from nearly three-dozen public witnesses from HIV community activists, who warned that the drug's promise could backfire by discouraging the use of condoms and offering false hope to healthy people unlikely put up with side-effects in order to maintain the daily dosage.
Some witnesses expressed concern that Truvada's $14,000 a year price tag could encourage the healthy to treat it as "a party drug" for weekend use, raising the danger of increasing HIV drug resistance and making the treatment harder to obtain for people who are infected with HIV.
"They'll take the drug when they think they need it," said Dr. Catherine Chien, who like many of the meeting's 38 public witnesses works with the nonprofit AIDS Healthcare Foundation, a global organization that says it helps nearly 170,000 HIV and AIDS sufferers.
"This will lead to higher rates of HIV infection and higher rates of HIV drug resistance," she said.
Half a dozen public witnesses endorsed Truvada for preventive use, some saying it would protect people in high-risk groups whose sexual partners are unwilling to use condoms.

"Today is an exciting day for HIV prevention," Dr. Kenneth Mayer of the nonprofit Fenway Institute said after the committee voted.
"Although (Truvada) is not a panacea, this approach can prevent many new infections and could dramatically impact HIV transmission worldwide," he said.
Some panel members, concerned about the danger of drug resistance, urged the FDA to restrict the availability of Truvada as a preventive measures by requiring prescribing physicians to certify through results that their patients are not infected by HIV when they start taking the drug.
Other panel members replied that the practice would be recommended but that requiring such a restriction could pose a burden and prevent HIV patients who need Truvada to manage their infections from getting the drug.
FDA officials also said restrictions could be easily circumvented because the drug is also sold to HIV infected patients.

 

Romatizim kisilige yingi dora

Romatizim kisilige yingi dora

 

Romatizim kisilige giriptar bolghanlargha yingi umut. Yiqinda tofacitinib dep atalghan romatizim kisilining dorisi FDA terepidin testiqlinip bazargha kirmekchi iken. Romatizim kisili hazirgha qeder unumluk dawasi bolmighan kiselliklerning biri bolup, bu kiselge giriptar bolghanlar uzun zaman tizi we put qolning bighishliri aghrishtek kisel azawigha berdashliq birip yashashqa toghura kiletti. Bu dorining barliqqa kilishi bu kiselge giriptar bolghan milliyunlighan bimarlargha rahet bighishlighusi.

 

U.S. FDA advisers back Pfizer arthritis drug

Wed, May 9 2012

By Anna Yukhananov
SILVER SPRING, Maryland (Reuters) - Pfizer Inc won support from a U.S. advisory panel on Wednesday for its arthritis drug, which the world's top drugmaker hopes will give it a major boost after a wave of patent expiries.
A panel of outside experts to the U.S. Food and Drug Administration voted 8-2 to recommend approval of tofacitinib, a treatment for patients with rheumatoid arthritis who have not had success with at least one other drug for the disease.
Analysts see tofacitinib as a potential blockbuster, with peak sales of $2 billion to $3 billion a year, if its benefits are deemed to outweigh the risks. It could also help revive faith in Pfizer's research prowess. The company has not produced a major new medicine from its own labs since impotence treatment Viagra more than a decade ago.
Pfizer shares, which rose as much as 2.6 percent after the vote, closed 1.1 percent higher at $22.45.
The FDA usually follows panel recommendations, although it is not required to do so, and a final decision is expected in August.
If approved, the likely cheaper pill would compete with widely used injectable medicines, including Abbott Laboratories Inc's $8 billion-a-year biologic drug, Humira.
"I think the data for efficacy is compelling and it's at least as good as other biologic agents," said Dr. Maria Suarez-Almazor, panel member and section chief in rheumatology at MD Anderson Cancer Center in Houston.
However, most panelists said the drug should only be used once patients had tried at least several other drugs for the disease, not just one. They expressed concern about some of its side effects, such as infections and malignancies, or cancerous cells that can spread.
"There are enough safety signals that are concerning ... so I wouldn't be comfortable starting one of my patients right after one (rheumatoid drug) failure," Dr. Suarez-Almazor said.
In a review earlier this week, FDA staff said tofacitinib may have a higher risk of serious infections such as pneumonia and a possible link to malignancies, which may get worse with higher doses or longer exposure to the drug. Panelists called on Pfizer to study the drug's safety post-approval.
Most analysts said the panel's vote meant the drug was likely to be approved, although doctors were unlikely to prescribe it to patients unless they had tried several other options, limiting initial sales.
LUCRATIVE FIELD
Rheumatoid arthritis and related diseases have been one of the most lucrative areas for drugmakers, with more than $20 billion in annual sales.
An estimated 1.3 million Americans suffer from rheumatoid arthritis, according to the Arthritis Foundation. About 1 percent of the world's adult population has the disease.
Besides Humira, other treatments include Enbrel, made by Amgen Inc, and Johnson & Johnson's Remicade. All of these are costly, injectable drugs that block a protein called tumor necrosis factor (TNF) that is tied to inflammation.
Pfizer's treatment is a traditional chemical pill that works by blocking signals that activate immune and inflammatory responses in the body. It is the first in a new class of drugs called JAK inhibitors.
Analysts and doctors have said about 30 percent to 40 percent of patients with rheumatoid arthritis do not respond to available drugs, meaning there is room for other options.
Tofacitinib's most attractive feature over older drugs may be its dosing. Patients take it twice a day in tablet form, rather than having to inject themselves every other week, as with Abbott's Humira.
Pfizer is also studying the drug for other conditions, including inflammatory bowel diseases, psoriasis and dry eye.
"The (rheumatoid arthritis) patient population needs additional treatment options and Pfizer looks forward to working with the FDA on next steps," Dr. Yvonne Greenstreet, senior vice president and the head of Medicines Development Group for Pfizer Specialty Care, said in a statement.
(Editing by Maureen Bavdek, Matthew Lewis and Andre Grenon)

Eng qiyin bolghan yuz almashturush

Dunyada eng qiyin bolghan yuz almashturush opiratsiyesi muhapiqiyetlik bolup, Amerkining Virginiya shitatida yashaydighan bir adem yingi yuzge irishken. Yingi yuzge irishken bu kishi bu yil 37 yash bolup, 15 yil ilgiri putun yuzi oq bilen zexmilendurulgen, we bu 15 yil jeryanida yuzini maska bilen taqap yashap kelgen iken. Maryland University diki doxturlar 36 saet dawam qilghan opiratsiye arqiliq, bashqa bir kishiningi qash, burun, eghiz, chish, til, yuquri, towen ingekini oz ichige alghan toluq yuzini bu kishige almashturup muhapiqiyet qazanghan. Opiratsiyedin bir hepte kiyin bu kishining salmetligi eslige kilip, kozini achalaydighan, chishini chotkiyalaydighan we saqilini alalaydighan bolghan, hetta puraqni puriyalaydighan bolghan.

Most Extensive Face Transplant Finished

abcnews.go.com

Virginia man got new jaw, teeth and tongue after a gun accident.

http://img.gawkerassets.com/img/17hrpm3u5v04ajpg/original.jpg

Yulun sur madda yallugi

Otken yili Hotende yulun sur madda yallugi (Poliomyelitis, 脊髓灰质炎) digen kisel tarqap, bir qisim balilarning bir omur palej bolushi hette olup kitishini kelturup chiqarghan bolghan, xelqara metbuatlardimu ilan qilinghan, we yerliq xelqler arisida melum derijide wehime we endishe peyda qilghan idi. Shu seweptin bezi kishiler ichide bu kiselge nisbeten bezi gumanlar qozghalghan iken. Yiqinda wetendin birsi manga bu toghursida towendiki bir parche hetni yizip, bir nechche soal sorighan iken. Mining u soallargha bergen jawabimni bashqilar bilen ortaqlishish mehsitide, bu yerde ilan qildim.

Men balilardiki harhil yukumluk we bashka kesalliklarning aldinish elish uchun waksina amlitishta izchil ching turup kalgan idim, ham bashkilargimu shuni tashwik kilattim, balkim otkan yili Uygur rayonida tarkalgan yulun sur madda yallugidin hawardar bolsingiz kerak, bu ish hatta halikaraningmu dikkitini kozgap chetallardin takshurush omakliri kaldi, hokumat tarapmu bu ishka jik kuchidi,

amma bak kop kishilar bundak waksina amlitishka etibar karimaywatidu, baziliri waksininig paydilik taraplirini bilmasliktin bolsa baziliri waksina ziyanlik dap karigini uchun . hatta baliriga zadi waksina amlatmaydigan ham karshi turidiganlarmu jik.

Soal:

(1) Undakta sizcha waksina amlitish ziyanlikmu? Uni ziyanlik deyishning ilmiy asasi barmu?

Jawap: Bu soalgha jawap birishtin ilgiri, waksinining nime ikenligini chushunup otishimiz lazim. Waksina diginimiz kisel peyda qilghuchi amil (病原体) yeni virus we yaki baktiryelerning zehersizlendurulgen qismidin, we yaki uning kisel payda qilish alahidiligini chiqirip tashlighandin kiyinki qismidin, we yaki olgen virus, baktiryelerdin yasap chiqilghan, bedenge urulghandin kiyin bedende kisel peyda qilmaydighan, biraq bedende beden sirittin tawuzgha uchurghan bir signal peyda qilish arqiliq, bedenning imuyunut kuchide oyghitish peyda qilip, shu waksina yasalghan virus we yaki baktiryege nisbeten qarshi kuch (antibody 抗体) peyda qilishqa turtke bolidighan nerse. Bedende waksinidin kiyin peyda bolghan imiyunut kuch (antibody 抗体) melum mezgil (Bir yldin bir omurgiche, ohshimighan uzunluqta) shu kiselge nisbeten iside saqlash, toniwilish we uningdin mudapiye korush rolini oynaydu. Netijide shu hildiki kisel peydaq qilghuchi amil bedenge tajawus qilip kirgende, beden shu kisel peyda qilghuchi amilgha qarshi peyda bolghan imiyunut kuchi (antibody 抗体) arqiliq, u kiseldin mudapiye koreleydu.

Waksina udurush ziyanliqmu, digenge kelsek, supet jehette yahshi konturul qilinip, biheterlik olchemdin otken waksina ziyanliq emes. Yeni uning bedende kisel peyda qilish nisbiti etibargha laghidek derijidin kop towen. Eger supet jehette yahshi konturul qilinmighan, biheterlik jehette mukemmel sinaqtin otmigen waksina bedende shu hildiki kiselni peyda qilishi mumkin. Chunki waksina del shu kisel peyda qilghuchi amil (病原体) yeni virus we yaki baktiryelerdin yasalghan bolghanlighi uchun, biheterliki yahshi konturul qilinmighan bolsa, bedenge kirgendin kiyin qayta tirilip, bedende kisel qilish alahidiligini qayta eslige kelturushi, we bedende shu hildiki kisellerni peyda qilishi mumkin. Shunga uni ziyanlik deyishning ilmiy asasi barmu digende, buninggha yuqarda men dep otken emili ehwalgha qarash kirek.

(2) Waksina urmisaq yulun sur madda yallugi qatarlik eghir kesallarni kandak tizginliyeleymiz we aldini alimiz?

Jawap: Yulun sur madda yallugi qatarlik eghir yqumluq kesallerni tizginleshte hazirche waksinidin bashqa alahide unumluk chare yoq. Bu kisel we bashqa bir qisim yuqumluq kisellerge nisbeten, eng unumluk aldini ilish charisi, yenila waksina udurush. Her hil waksining dunyagha kilishi bilen, burun kishilerning jinigha zamin bolghan we yaki kishilerni bir omur miyip qilip qoyghan nurghun eghir kiseller yahshi tizginlinip unumluk konturul bolmaqta. Mesilen siz tilgha alghan yulun sur madda yallugi shu nam yeni POLIOVIRUS (脊髓灰质炎病毒) dep atalghan bir hil virusning eghiz arqiliq yuqushidin kelturup chiqarghan bir hil yuqumluq kisellik bolup, taziliqqa diqet qilish arqiliq, bu kiselni melum derijide tizginligili bolsimu, biraq bu kiselni eng unumluk tizginleshning amali yenila waksina urush. Kishiler bolupmu kichik balilar bu virus bilen yuqumlanghanda, kop qismida eghir kisel alametliri korulmeydu, we ozligidin yahshi bolup kitishi mumkin, peqet bir qisim yuqumlanghuchi balilarda, bu virus nirwa we yulungha tesir korsutup, yuqumlanghuchini mengguluk palaj qilip qoyushi, hetta qisqa waqitta jinigha zamin bolishi mumkin. Bu kiselge nisbeten hazirgha qeder hichqandaq unumluk dawalash usuli yoq bolup, dawalashta peqetla bashqilargha yuqturup qoyushni kontutul qilish bilen birge, bimarning imiyunut kuchini yuqurlutup, bimarning oziligidin yahshi bolup qilishni kutup turushtin bashqa amal yoq. Yulun sur madda yallugi digen bu kiselning waksinisini omumlashturush netijiside 2012-yiligha kelgende putun dunyada peqet Hindistan, Pakistan, Afghanistan we Nigiryede yenila tarqiliwatqanni hisapqa almighanda, nurghun dowletlerde nahayti yahshi tizgenlengen.

(3) Kishilar waksiniga karshi turushtiki yana bir sawap Israliyida Yahudiylar yarlik Arap baliliriga, Amirikida Indiyan baliliriga ziyanlik okullar urulgan ikan, bu yardimu Uygurlarga shundak okullar urulushi mumkin, dap waksina amlatmaslik maslisi bar. Undakta sizning Uygurlarga shundak okullar urululidigan ishtin hawiringiz barmu? Buning birar amaliy pakiti barmu?

Jawap: Amerkida, burun yeni 4, 5 yuz yil ilgiri, aq tenlikler Yawropadin Amerkigha kochup kilishke bashlighanda, Yawropaliqlar arisidiki bezi kisellikler Indiyanliqlar arisida tarqap, nurghun Indiyanliqlarning olup kitishige zamin bolghan iken, uni asasliqi Yawropaliqlar arisida tarqap kiliwatqan u kiselliklerge nisbeten Indiyanliqlarda hichqandaq immiyunt kuchi bolmighanliqtin dep qarashqa bolidu. Hazir siz dep otken bundaq bir ishning bolushi miningche putunley asasi yoq gep, hem undaq bir ish qilishning hichqandaq zoruyitimu yoq.

Uygurlarga shundak okullar urulushi mumkinmu digen ishqa kelsek, men bu toghursida alahide bir hewer anglimidim, bundaq bir ish bolghan teqdirdimu, bundaq ishlarning ispati bilen siritqa ashkare bolushi nahayti qiyin, chunki bundaq bir ish hichqandaq bir dowletke sherep ekelmeydu. Uning ustige bir adem yene bir ademge ziyan yetkuzimen dise, uningha waksinidin bashqa nurghun amallar bar. Shunga kiselning aldini ilishni bana qilip, bashqilargha kisel silish, herqandaq bir dowlet we rayunda eyiplinidigha insan qilipidin chiqqan shermendichilik. Yene bir tereptin bu ishni bar digendimu, u belkim ayrim bir shehsining qilmishi bolup, bir dowletning sistimiliq qilmishi bolushi natayin. Bu mining shehsi koz qarishim.