Proteus syndrome: ndi chiyani, momwe mungazindikirire ndikuchizira

Zamkati

• Zinthu zazikulu
• Zomwe zimayambitsa matendawa
• Momwe mankhwalawa amachitikira
• Udindo wama psychologist ku Proteus syndrome

Matenda a Proteus ndimatenda achilendo omwe amadziwika ndi kukula kwamafupa, khungu ndi ziwalo zina, zomwe zimapangitsa gigantism yamiyendo ndi ziwalo zingapo, makamaka mikono, miyendo, chigaza ndi msana.

Zizindikiro za Proteus Syndrome nthawi zambiri zimawoneka pakati pa miyezi 6 ndi 18 yazaka zakubadwa ndipo kukula mopitilira muyeso kumatha kuyima muunyamata. Ndikofunikira kuti matendawa azindikiridwe mwachangu kuti achitepo kanthu mwachangu kuti akonze zolakwika ndikukweza mawonekedwe amthupi mwa odwala, kupewa mavuto amisala, monga kudzipatula pagulu komanso kukhumudwa.

Zinthu zazikulu

Proteus syndrome nthawi zambiri imayambitsa kuwonekera kwa zinthu zina, monga:

• Zofooka m'manja, miyendo, chigaza ndi msana;
• Asymmetry ya thupi;
• Kuchulukitsa khungu;
• Matenda a msana;
• Kutalika nkhope;
• Mavuto amtima;
• Njerewere ndi mawanga kuwala pa thupi;
• Kukula kwa nthata;
• Wonjezerani m'mimba mwake mwa zala, zotchedwa digito hypertrophy;
• Kulephera kwamaganizidwe.

Ngakhale pamakhala zosintha zingapo zakuthupi, nthawi zambiri, odwala omwe ali ndi matendawa amakhala ndi nzeru zambiri, ndipo amakhala ndi moyo wabwinobwino.

Ndikofunikira kuti matendawa adziwe msanga momwe angathere, chifukwa ngati kuwunika kumachitika kuyambira pomwe kusintha koyamba, sikungathandize popewa kusokonezeka kwamaganizidwe, komanso kupewa zovuta zina zomwe zimayambitsa matendawa, monga monga mawonekedwe a zotupa zosowa kapena kupezeka kwa venous thrombosis.

Zomwe zimayambitsa matendawa

Zomwe zimayambitsa matenda a Proteus sizinakhazikitsidwe bwino, komabe amakhulupirira kuti mwina ndi matenda amtundu womwe amabwera chifukwa chosintha kwadzidzidzi mu jini la ATK1 lomwe limachitika pakukula kwa mwana wosabadwayo.

Ngakhale ali ndi chibadwa, matenda a Proteus samawerengedwa kuti ndi obadwa nawo, zomwe zikutanthauza kuti palibe chiopsezo chotenga kusintha kuchokera kwa makolo kupita kwa ana. Komabe, ngati pali zovuta za Proteus syndrome m'banjamo, tikulimbikitsidwa kuti upangiri wamtunduwu uchitike, chifukwa pakhoza kukhala chiyembekezo china chazomwe zingachitike pakusinthaku.

Momwe mankhwalawa amachitikira

Palibe mankhwala enieni a Proteus syndrome, ndipo nthawi zambiri amalimbikitsidwa ndi adotolo kuti azigwiritsa ntchito mankhwala kuti athetse zizindikilo zina, kuphatikiza pakuchita opareshoni kuti akonze zotupa, kuchotsa zotupa ndikupangitsa kuti thupi lizisangalala.

Matendawa akapezeka koyambirira, amatha kuwongolera pogwiritsa ntchito mankhwala otchedwa Rapamycin, omwe ndi mankhwala opatsirana pogonana omwe akuwonetsedwa ndi cholinga chopewa kukula kwaminyewa ndikuletsa mapangidwe.

Kuphatikiza apo, ndikofunikira kwambiri kuti chithandizo chichitike ndi gulu la akatswiri azaumoyo, lomwe liyenera kuphatikizapo madokotala a ana, orthopedists, opaleshoni ya pulasitiki, dermatologists, madokotala a mano, ma neurosurgeons ndi ma psychologist, mwachitsanzo. Mwanjira imeneyi, munthuyo amakhala ndi chithandizo chonse chofunikira kuti akhale ndi moyo wabwino.

Udindo wama psychologist ku Proteus syndrome

Kuyang'anira zamaganizidwe ndikofunikira osati kokha kwa wodwala matendawa komanso kwa abale awo, chifukwa mwanjira imeneyi ndizotheka kumvetsetsa matendawa ndikutsata njira zomwe zingathandizire moyo wamunthu komanso kudzidalira. Kuphatikiza apo, wama psychologist ndikofunikira kuti athe kukonza zovuta kuphunzira, kuthana ndi zovuta, kuchepetsa kusapeza bwino kwa munthu ndikulola kuyanjana.